Navigating Change – UK specialised adult cystic fibrosis service delivery in the highly effective modulator therapy era

Navigating Change – UK specialised adult cystic fibrosis service delivery in the highly effective modulator therapy era | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Navigating Change – UK specialised adult cystic fibrosis service delivery in the highly effective modulator therapy era Joanne Barrett, Sally Amelia May Fenton, Alice Margaret Turner, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9020027/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 12 You are reading this latest preprint version Abstract Background Cystic Fibrosis (CF) is a life limiting inherited disease that primarily effects the respiratory and gastrointestinal systems. Patients with CF have complex healthcare needs requiring multidisciplinary specialist centre care, as this is associated with improved health outcomes. Recent introduction of highly effective modulator therapies has significantly improved the health and life expectancy of this population. This study aimed to explore CF healthcare professionals experience of the impact of highly effective modulator therapies on specialist services. Methods Qualitative semi-structured online focus groups (n = 5) and individual (n = 8) interviews were conducted with 10 dietitians, 6 physiotherapists,4 clinical nurse specialists and 3 doctors working in adult CF centres. Interview data were analysed using the framework method. Themes and subthemes were mapped to Bronfenbrenner’s socio-ecological model to characterise the individual and interpersonal (micro), organisational (meso) and policy levels (macro) and chrono (time) influence of highly effective modulator therapies on the CF healthcare service model. Results Five main themes were identified; existing challenges (timeline -chrono), generalist vs specialist (individual - micro), relationships and roles (interpersonal - micro ) , model of care ( organisational – meso), normalising amid uncertainty (CF culture and society - macro). Conclusions Since the introduction of highly effective modulator therapies, specialised CF multidisciplinary teams have experienced a change in the healthcare needs and life expectancy of their patients due to fewer respiratory exacerbations, improved lung function, and weight gain. Services are now transitioning from acute care to the management of a chronic condition. As people with CF live longer and experience co-morbidities increasingly similar to the general population, services will need to incorporate approaches that prevent and manage co-morbidities associated with overweight, obesity and ageing. Targeted training, role development, and a change to infrastructure will be required to ensure CF services remain responsive to the evolving health needs of their patients. Partnership with primary care and clearer referral pathways to other specialist services will be essential to delivering effective care in the most appropriate settings. Research to develop effective behaviour change interventions and optimal nutritional targets for patients prescribed highly effective modulator therapies is required to direct clinical practice. cystic fibrosis specialised services CFTR modulator therapy semi-structured interviews socio-ecological model multidisciplinary care Figures Figure 1 Background Cystic fibrosis is a complex multisystem genetic disorder that primarily effects the respiratory and gastrointestinal systems ( 1 ). Patients with cystic fibrosis (CF) have complex health needs that require close monitoring by a specialist multidisciplinary team (MDT) of healthcare professionals ( 2 ). Respiratory exacerbations and non-pulmonary complications require timely intervention to prevent deterioration and minimise disease progression. ( 3 , 4 ). Key aspects of CF care include the management of chronic respiratory disease with antibiotics, chest physiotherapy, exercise, and the optimisation of nutritional status. The majority of patients require pancreatic enzyme replacement therapy (PERT) to manage malabsorption and maldigestion because of pancreatic insufficiency, and are normally recommended to eat high energy diet to maintain a body mass index (BMI) at the recommended targets of 22kg/m 2 for women and 23kg/m 2 for men( 5 ). Existing CF specialist centres in England operate based on UK standards of care and National Health Service (NHS) service specifications; these benchmark staffing requirements, facilities, patient access, monitoring, and outcome data( 2 , 6 – 8 ). Patients receive their care at specialist centres in line with recommendations and this has been associated with improved clinical outcomes ( 9 , 10 ). Specialist centre care is delivered by a multidisciplinary team (MDT) including specialist doctors, clinical nurse specialists, physiotherapists, dietitians, pharmacists, psychologists, and social workers all trained and experienced in managing people with this complex disease. CF multidisciplinary teams (CF MDT) provide holistic patient care, often caring for patients throughout their lifespan hence develop long-standing relationships ( 11 ). Specialised CF centre services are delivered via hospital inpatient care, in-person, and virtual outpatient clinics and through outreach services in patients’ homes. Virtual outpatient clinics alongside remote monitoring introduced during the COVID-19 pandemic have remained in place. These have been found to be acceptable to most patients and health care professionals, as they reduce the frequency of hospital visits, decrease time way from work or study, and lower the costs associated with long-distance travel to regional CF centres.( 12 – 14 ).However, the benefits on clinical outcomes have been variable and many centres are returning to in person care due to concerns over poor patient adherence to home monitoring and early symptom awareness by patients which may be harder for patients to recognise on HEMT ( 15 ). This model of care, the introduction of newborn screening and treatment advancements have improved the health and life expectancy of patients with CF over the last 35 years. However the introduction of HEMT has led to the most significant increase in median life expectancy to 66.2 years for patients in the UK( 16 , 17 ). HEMT are the most recent generation of CFTR modulator therapies, which treat the underlying cause of cystic fibrosis by correcting the defective production and function of the cystic fibrosis transmembrane regulator protein. The first CFTR modulator monotherapy, ivacaftor (Kalydeco®) became available in 2012 to patients 12 years and over who were heterozygous for the G551D mutation in England ( 18 ). Eligibility was later broadened to include other class III mutations, infants, and younger children. This was followed in 2019 by the introduction of dual therapy ivacaftor/tezacaftor (Symkevi®) for patients 12 years and over who were homozygous for the most common delF508 mutation or heterozygous with a residual function mutation.( 19 , 20 ). In 2020, elexacaftor/tezacaftor/ivacaftor (Kaftrio®(ETI) was the first triple CFTR modulator therapy, and HEMT to become available to patients who were homozygous for the delF508 mutation with the majority of patients in the UK eligible for this treatment from the age of 2 years ( 21 , 22 ). ETI has recently been succeeded by vanzacaftor/tezacaftor/deutivacaftor (Alyftrek®) which although only shows small additional improvements in health outcomes has the added benefit of once-a-day dosing for patients ( 23 ). The impact of these treatments on the health trajectory and life expectancy of patients with cystic fibrosis is challenging the existing model of care delivered by adult specialist centre services. As more patients with CF live into older age, have fewer acute life threatening events, adult CF services will need to adapt, or may already be adapting to meet the changing and emerging health care needs of their patients ( 24 , 25 ). To date, qualitative studies have focused on the impact of HEMT on patient’s own health and wellbeing ( 26 , 27 ), as well as clinician and patient perceptions of decision making regarding the start of HEMT. Parental perceptions of HEMT for their child and its impact on the types of support they required has emphasised the psychological support and the reformation of service provision required( 28 ).This study aimed to capture this change by exploring with CF health care professionals (CF HCP) experiences of the impact HEMT on adult CF healthcare services and how the model of care is adapting to the changing health needs of service users. Methods Study Design A qualitative descriptive semi-structured interview study design (29) was used to explore CF HCPs experiences of delivering weight management in the context of a specialist CF service since the introduction of CFTR modulator therapies. The semi‑structured interview guide was informed by the knowledge gaps identified in the existing literature, and the research team’s clinical and methodological expertise. CF healthcare professionals reviewed the draft guide, and the questions were refined in response to their feedback ( see supplementary file). Study Participants A purposive sample of CF HCPs were recruited via communication with professional organisations, groups and social media between February and July 2024. Participants were screened and deemed eligible to take part if they were a physician, physiotherapist, dietitian, clinical nurse specialist, or psychologist practicing in a UK adult CF centre. Recruitment continued until no new themes emerged and data saturation was reached (29). Data Collection Qualitative semi-structured online focus groups and individual interviews were conducted between April and September 2024 with 23 CF HCPs working at UK adult CF centres. Interviews were conducted by a female experienced cystic fibrosis dietitian/researcher (JB) with qualitative research experience supported by an experienced qualitative researcher (AT). Several participants were known to JB through professional networks. To facilitate busy clinician participant attendance, interviews were delivered via videoconferencing (Zoom®)platform using an interview guide (30). Focus group interviews were conducted with homogeneous groups of health care professionals and two researchers (AT/JB) whereas one-to-one interviews were conducted solely by JB. The interview guide was modified as the study progressed in response to tentative inferences(31). Interviews were video and audio recorded using the speech to text transcription facility of the videoconferencing platform. Focus group interviews lasted 56-75 minutes. One to one interview’s lasted 20 - 59 minutes. One person withdrew following agreement to participate and no reason was given. Data Analysis The audio recordings of each interview were checked for accuracy and then imported into NVivo 14 to organise, code and chart the data(32).An inductive thematic framework approach was used (33). Initial independent descriptive coding of three focus group interviews with different health care professions to ensure a breadth of experience and perspectives informed the initial coding index. This coding index was developed and applied to all subsequent transcripts, with new codes added as they emerged. The framework was iteratively refined and conceptually related codes grouped into categories following discussion with AT. The framework matrix was then exported into Microsoft excel© where illustrative participant quotations were charted to enable the comparison of categories and codes, between and within individual participant data to identify any connections or patterns. The researcher used a reflexive approach, keeping a diary of assumptions and checking transcripts to ensure the analysis remained grounded in the participants accounts rather than personal clinical experience(34). To support rigour, themes and subthemes were then developed and further refined in discussion with a second researcher (AT). Themes and subthemes were then mapped to Bronfenbrenner’s socio-ecological model (SEM) (35). SEM was chosen because it provides a clear framework for describing the interrelated systems, unseen mechanisms, behaviours and contextual influences through which HEMT has influenced CF healthcare services across individual and interpersonal (micro), organisational (meso) and policy levels (macro). Additionally, the chrono-system has been used to illustrate the influence of this new treatment (HEMT) highlighting how the service has changed since its introduction (36, 37). Member Checking To verify the findings, themes and sub themes were presented to a representative sub-group (n=13) of participants during an online focus group and a series of one-to-one meetings(38). These served to confirm experiences, views and opinions had been accurately interpreted and no revisions the thematic scheme were required. Results Five focus group interviews and 8 individual interviews were conducted with 23 CF HCPs: 10 dietitians, 6 physiotherapists, 4 clinical nurse specialists and 3 doctors (1 male). Participants had a wide range of experience of between 11 and 30 years, working at 11 different UK adult CF centres. The numbers of patients managed by these specialist centres ranged from less than 150 patients to more than 300. (table 1.) Table 1. Participant Characteristics Type of Interview Health Care Professional Size of adult CF centre currently practising at number of years of clinical practice experience of CF FG CNS 01 300 9 years FG CNS 03 300 23 years FG Diet 01 >300 28 years FG Diet 02 150-200 17 years FG Diet 03 >300 5 years FG Diet 04 <150 10 years FG Diet 05 300 3.5years FG Diet 07 150-300 1 year FG Diet 08 >300 4 years FG Diet 09 >300 10 years OTO Diet 10 >300 15 years OTO Physio 01 >300 8 years FG Physio 02 >300 16 years OTO Physio 03 >300 3 years FG Physio 04 150-300 27 years OTO Physio 05 >300 8 years OTO Physio 06 >300 4.5 yrs OTO Doctor 01 >300 24 years OTO Doctor 02 150-300 30 years OTO Doctor 03 >300 12 years CNS (clinical nurse specialist), Diet (dietitian), Physio (physiotherapist), Doctor (cystic fibrosis consultant) Five main themes with subthemes were identified and mapped to the micro, meso, macro and chrono levels of the socio-ecological model; existing challenges (time -chrono), generalist vs specialist (individual - micro), relationships and roles; (interpersonal - micro), model of care (organisational – meso), normalising amid uncertainty (CF culture and society - macro).(table 2). Table 2. Themes and sub-themes within each of the five-levels mapped to the socio-ecological model (SEM) Level within SEM Theme Sub Themes Timeline (Chrono) Existing challenges Significant rapid weight gain ETI exacerbating an increasing prevalence of overweight and obesity. Weight gain with introduction of ETI during covid 19 pandemic Uncertainties about future health implications of overweight and obesity Individual CF Health Care Professionals (Micro) Generalist vs Specialist Impact on clinical practice Transferable Roles and Skills within the CF MDT for weight management Interpersonal relationships with patients and the CF MDT (Micro) Relationships and roles Valued long-term relationships with patients. Reluctance to risk upsetting patient relationships Tentative Weight Management Conversations Hesitance to add to the patient’s treatment burden. Preserving professional boundaries and MDT relationships Organisational -CF Specialised Service Model (Meso) Model of care Limitations to delivery of behaviour change Limited access to CF‑appropriate weight management and exercise services Flexible access to the CF MDT and weight management choices Developing services, roles and skills to meet changing patient need Future uncertainties of a CF specialised service CF Culture and, Society (Macro) Normalising amid uncertainty Navigating the shift from dependency to self-management Normalising overweight and obesity in context on non-CF population Social media influences Limited evidence and guidance for clinical practice The Chronosystem. Timeline –existing challenges ETI therapy became available to patients in August 2020 when patients were self-isolating during the covid 19 pandemic, and CF healthcare was largely delivered virtually unless urgent or inpatient treatment was required (22, 39, 40). Surveillance of the impact of ETI was limited until remote monitoring was established, shielding ceased, and in person ‘normal’ monitoring resumed. Then the extent of the impact on weight became apparent. This was greater than anticipated, both in terms of the number of patients who had experienced weight gain and the amount. Participants felt that self-isolation had contributed to the failure to recognise weight gain and services were unprepared for the volume of people with CF who were experiencing overweight and obesity. Some dietitians commented that ETI therapy had accelerated overweight and obesity and it was emerging as a concern prior to, and not exclusive to the introduction of modulator therapy. ‘I don't just think it is drug. You know we were seeing overweight and obesity before Kaftrio or any of the modulators, and I think you know, as dieticians for the last 10 plus years, we've been really encouraging health, eating and exercise’ (Diet 01) ‘……. there’s been a sort of a significant change and I think because of the modulators and also because when they were licensed, it was during or just after the whole lockdown period. So, I think for a lot of our patients, there was a bit of a double whammy going on.’ (Diet 10) Some voiced concerns about the long-term impact overweight and obesity would have on the health of patients and the development of co-morbidities such as cardiovascular disease. 'Worried about metabolic syndrome. I'm worried about the blood pressure, hearts, the state of their vasculature is going to be arterial calcification and those long-term consequences. There's no point saving someone's life with Kaftrio® and then having them die of a heart attack' Doctor 03) The Micro System. Individual CF Health Care Professionals; generalist vs specialist Participants described changes to their clinical practice since the introduction of ETI therapy. There was a recognition that new knowledge and upskilling was required to meet emerging health needs of their patients. They were managing more patients living with overweight and obesity, making diabetes management more complex, and central venous access devices more difficult to access. More patients were presenting with body image issues because of weight gain. HCPs suggested that many patients expressed preferring a slimmer body image. Also, advice about adopting healthy eating had unmasked issues with disordered eating behaviours and those with a dietary intake consisting of limited food variety. ‘And there's a lot of I think it's more body image issues and kind of restrictive, more disordered eating coming to light, and within some of some of the patients. So, I guess we have quite a young cohort as well, and I think body image is quite a significant’ (Diet 05) Physiotherapists were spending less time on airway clearance therapy but dealing with an increase in the number of patients with musculoskeletal (MSK) complications (e.g. knee or back pain). Additionally, more patients were experiencing mental ill-health, and services were supporting more CF patients through pregnancy. ‘So, from a muscle skeletal point of view, you know, we do see patients come in saying, you know, you know, of experiencing more joint pain because they've, you know, put on weight. They feel like they've put on weight, or things have changed since the Kaftrio®. So, I've noticed that’ (Physio 05) Both dietitians and physiotherapists recognised they had the capabilities for delivering diet and physical activity behaviour change interventions as part of their professional training such that, supporting the increase in patients with overweight and obesity was within their skillset. Yet not all physiotherapists felt confident to advise on exercise and this related to training, personal interest and clinical experience. ‘we've got really really good skills, that working on engagement, working on habits, understanding adherence, understanding change in, you know, in the face of psychological adversity. (Diet 04) ‘, I will sometimes recommend that a patient specifically speaks to my colleague about exercise, because I have a feeling that he's got the right skills where I'm lacking and that is very helpful.’ (Physio 02) Shifting dietary advice from recommending high calorie intake to healthy eating and weight management represented a significant change in routine clinical practice for specialist CF centre dietitians. Although they had the knowledge and skillset to deliver general health eating advice some felt less confident managing obesity and those with disordered eating. navigating requests to access weight loss medications was also challenging; those who lacked knowledge or confidence typically sought training from other specialists to refresh or enhance their knowledge and skills. ‘(in) general leading the weight management when we've got BMIs of low thirties. 25. But wouldn't you hit that high thirty forty? I'm out of my depth sometimes. And I think …there, are methods out there which weight management services use, and things(but) is that appropriate in CF? what can be used in CF? sort of that higher level sort of top end.’ (Diet 08) The microsystem. Interpersonal relationships with patients and the CF MDT – relationships and roles The CF HCPs all discussed the importance of their relationships with patients. They valued the continuity specialist services provided and the opportunity to have long term relationships, to ‘ really know’ their patients and go on the modulator journey with them. ‘We have that rapport with our patients as well. So, they tend to trust us, and they will tell us kind of what's appropriate for them each particular time, so we can then stage the intervention. We know them kind of lifelong. So, we have the time, and with them as well, to make those changes.’ (Diet 05) Yet they recognised the nature of patient/HCP relationships was changing with less opportunities to build relationships with virtual monitoring, and fewer (if any) sudden and acute episodes of deterioration due to better health outcomes. ‘The younger people coming up (transiting from children and young people CF care) that we don't see very often. Now it's going to be hard for us to try to persuade, encourage guide them as much because we don't have the same relationship because we don't see them in hospital every 3 months. We don't look after them for 2 weeks out of that 3 month. We don't treat their chest twice a day. I think you know some of the limitations on our relationships are going to be greater than they perhaps were, so we might not have the same relationship to be able to encourage quite so much.’ (Physio 04) Dietitian participants described hesitancy when advising patients to change their dietary habits, fearing it might add to already high treatment burden. They perceived patients lacked motivation for dietary change as they were experiencing improved health; all factors that influenced reluctance to raise concerns in consultations. ‘they've (People with CF) got enough burden. Why are we burdened? Why are you trying to burden them with these extra problems? I think there's a fear that we're burdening people who are already quite burdened with poor health, that we're adding’ (Diet 03) Participants described approaching the topic of weight management indirectly and tentatively due to concerns that a difficult conversation might compromise relationships and/or patient engagement in the service. ‘We’d just started seeing people again (post-covid). We had to be really careful what we said to patients, because even if you said something like Oh, you look well, people would interpret that as Oh, you mean, I've got fat and you had to sort of tread very, very carefully and with people. And sometimes just trying to avoid that? Weight words altogether as well.’ (Diet 02) ‘It's a very delicate territory to be in, I think. Because we're always going to be working with them………. If I was less worried about the repercussions of that relationship that we need to maintain, I would be pushing harder. I think if you push too hard, and then, if they don't want to work with you, they don't want to engage. They might then say in future clinics. So, I don't want to see Physio today.’ (Physio 01) They also described adopting weight neutral language and trying to steer away from quantifying weight gain as CF monitoring is ‘numbers’ driven. If patients’-initiated conversation about weight management, it gave the clinician permission to be open. ‘I think people find it a very personal conversation... So, you do have to, or I find that it's probably easier to come at it from a health concerned perspective rather than anything else, or.......................What the patient's concerns are, because otherwise they just think you're getting at them. It’s the doctor having a go about (weight) so it's useful to come at it from a clinical perspective (Doctor 01). Participants perceived they had different but clearly defined professional expertise in the MDT. Dietitians taking the lead on weight management and giving general physical activity yet referred patients to physiotherapists for specific exercise advice. This way of working suited physiotherapists who were more comfortable giving exercise advice framed around weight management but were not as comfortable initiating these conversations whereas dietitians were expected to take the lead on weight management. ‘So, if that if they've been talking to somebody, we might let that person lead, but I think in general, the dieticians will lead on that, because I think the patients are expecting that conversation from the dieticians. So, I think our dietitian would say that she leads on most of it, which I think she was not expecting when she started.’ (Doctor 03) ‘I tend to just ask them what they do at the moment and encourage whatever it is they believe they can do. I think I'll often say the Physio can chat to you a little bit more because I don't always know their functionality level of their breathing and things, so I'd never want to say. Just go for a run because you never know what they can do’ (Diet 08) CNSs described themselves as acting as a bridge between the patient and the rest of the CF Team, steering away from giving any advice and/or recommending patients to seek weight management advice. ‘If you're not the dietician. You might be the person that the patient will talk to about weight, that they don't want to talk to the dietician about. So, you can have that unique role of being, the confidante. And so, I guess that's where the nurse has a bit of a different role, maybe, than the dietician. …………. So, recognizing that there's something that there could be an intervention with.’ (CNS 03) ‘Normally okay, they'll they'll normally say, oh, you know, just oh, yes, I have (gained weight). But then nothing really. After that we don't. We haven't kind of probably delved into anything further, they might say I'm trying to lose a little bit, we've probably left that to the dieticians remit really’ (CNS 04) Whereas doctors normally reinforced advice given by others in the team, mindful that patients might feel overwhelmed by receiving advice from multiple team members. ‘We, we would have a preclinic meeting. And we might say. Okay to the dietitians do you want to bring it up? Because what we didn't don't want to do is feel this is someone to feel that we're all asking.’ (Doctor 03) The multidisciplinary approach and expertise within the CF MDT were considered by participants adaptable to the complexities of weight management. They recognised a consistent team approach to healthy lifestyle messaging was now required. ‘Yeah, I think it's trying to get your whole team to on board to say we really need to adopt a high, healthy lifestyle approach to manage CF now, and it needs to be coming from the doctors, physios, dieticians, everyone in the team.’ (Diet 01) Joint working between dietitians and physiotherapists was established , with two-way referrals part of normal practice. There was a feeling expressed that this joint approach for providing diet and physical activity advice worked well and prevented patients repeatedly discussing the same health concerns with different clinicians. ‘we've had a few more and sort of patients seeking support from both. like an MDT approach from the dieticians and myself, so that we've done more. So, it's like joint working with the dieticians’ (Physio 05) The meso system. Organisational - model of care Virtual clinics were now routine, partly pragmatic as avoids patient inconvenience (e.g. cost, time and for some loss of income, etc), alleviates clinic capacity issues as only one room required per clinic and reduces infection risk. With fewer patient contacts (e.g. reduced admissions) there are fewer opportunities to deliver supervised exercise, or personalised advice, and for dietitians inevitably respiratory, diabetes or gastrointestinal complications are prioritised over weight management. ‘It can be frustrating when you feel like in in those clinics, and you don't have as much time to have the full in-depth conversations to peel back the layers. ‘In in clinic again. Clinic rooms, space we're on. We know that other people are waiting to get in., (Physio 01)’ ‘I will pick the patients that are. maybe the diabetes is out of control or they're underweight. I would prioritise them, probably before the overweight and obese, because or if they've got like, you know, enzyme issues, they would all be higher priorities. So, the overweight and obese might be the ones that if I've got a bit of time I might see, but I might not.’ (Diet 02) To resolve some of these issues, some dietitians had established virtual dietetic clinics, outside of the CF MDT clinics, to deliver healthy eating education and/or weight management . ‘Well, we have adapted a little bit that A while ago we set up just a dietetic, only clinic that it was mostly focused for patients with diabetes, really. But we kind of call it an education clinic. So, it was. It's virtual. It's taking the patient out of that MDT. Clinic that was quite busy, and you flit in, don't you?’ (Diet 03) Physiotherapists reported they had continued to deliver virtual exercise classes that were initiated during the COVID pandemic or arranged one to one exercise sessions outside of MDT clinics. However, with patients being in better health their lives busier, they do not want additional appointments and attendance at online exercise classes had noticeably reduced since Covid. ‘I think during Covid. when everybody was shielding, we were able to implement more virtual exercise. Online activities at that point. And because people with CF were shielding and staying in the house, we definitely had a bigger surge on uptake of online classes at that point, (Physio 04) In recognition that every individual patient’s experience with CF modulators is different participants described how they had started to develop services to meet both the changing needs and preferences of patients However , there were resource barriers to providing responsive services. For example, several physiotherapists reported limited access to equipment for demonstrating exercise in outpatient settings, but alternatives such as NHS rehabilitation classes were unsuitable for CF service users as most were aimed at older adults. ‘Some people like group resource. We've had people that have gone to slimming world, weight watchers, things like that, because that's what they sort of wanted to do. And for some patients it's literally just spending time of them looking at their diet very individually, and giving them perhaps, some goals that are particularly related to them.’ (Diet 01) ‘We get like GP exercise, referral screens and live active. And those kinds of things. But they're not really. They're not specifically designed for young younger people. You know, they're more post cardiac, trans and post cardiac insult, or people with COPD or other respiratory problems. So, if you refer a younger person with CF. To somebody who's motivated to exercise, and they often don't present with them the same kind of issues that another person would have.’ (Physio 02) Despite the therapeutic benefit of exercise in the management of CF, many patients cannot access funding for home exercise equipment. Some apply to charitable schemes, but find they are now ineligible due to improved health status with HEMT. Local authority funded exercise referral schemes may not be available in all areas. ‘…. provision by councils and things has reduced over the last 10 years. There isn't much financial support for that kind of thing, and the CF Trust used to do more exercise grants and things, and that is the there is some, but it's very limited now.’ (Physio 02) Muscular skeletal (MSK) issues affecting activities of daily living are commonly experienced by CF patients (41). These issues may be related to CF, such as inflammatory arthritis, or other associated co-morbidities such as osteoporosis, diabetes nutrition, and lifestyle. Accessing specialist services to treat and manage MSK complications can be difficult and many experience long waiting times after referral. ‘ It's more joint problems. I guess some of it is a sedentary lifestyle, so that you're living more of a sedentary lifestyle. Then you're getting a lot more sort of back pain. joint pain, those kinds of things. …We have seen an increase in that. I also don't know if it's because people are less focused on their chest that they're then saying, telling us about all these MSK issues. And so it may be that before because they were so unwell and so focused on their chest that actually they had the MSK issues. They probably wouldn't be that bothered about them, whereas they’re more of a problem now’ (Physio 06). Patients with CF have an increased risk of eating disorders and disordered eating (42). Lifelong nutritional surveillance, frequent weight checks, a focus on weight gain and negative food-related experiences linked to gastrointestinal symptoms and poor appetite, may all contribute.(43). Dietitians reported they had been dealing with more patients with disordered eating and eating disorders that had been exacerbated, or went unrecognised, before the introduction of HEMT was now noticeable due to weight gain. In the UK access to specialist eating disorder services are limited the referral pathway for people with CF is largely uncharted and may involve delays. ‘We have, we have a few that we have referred to sort of just eating disorder services, but we find that it's really difficult in that and they have to wait months and months and months before we even just that initial phone calls sometimes.’(Diet10) Participants recognised there was a need for new roles, different skill mix or skill set across MDTs to address the emerging health needs of patients. There was some debate about whether to adopt a joint approach linking with other services or upskill existing staff to provide additional services as part of the CF service model; the later approach potentially diluting the specialist model. ‘But do we have the skill set to do it? We don't have the appropriate skill set, but should we be pushing ourselves? But then we're removing the specialist aspect because we're not specialists in that area but then they probably won't end up getting to the point where they need to. So, my thing with CF is, there so many questions, and not many answers. (Physio 01) One CNS participant who worked in a CF service that had undergone a review felt there was a need to review service delivery and redirect resources. ‘Whereas (if) what we want to do is promote a healthy lifestyle, because we've got this new medication. Now, that's actually given them (people with CF) a longer life expectancy. And so, because of that, that's why we need to re reinvent our CF services.’ (CNS 01) Whereas another thought that review might require different membership of the MDT. ‘So, looking at things a bit like that, we don't have an OT as part of our team, but I know from looking at other centres. They've got OTs on their team, or they've got youth workers. So, there's a little bit of looking at the MDT. And maybe slicing up the cake slightly differently’ (CNS 03) The macro system.CF culture and society- normalising amid uncertainty Before ETI therapy was introduced, CF healthcare services provided care for a population of patients who experienced severe ill health and were vulnerable to sudden, rapid, and life-threatening deterioration that required responsive treatment. Participating CF HCPs perceived that patients were still adjusting to the significant improvement in their overall health since starting HEMT. This influenced how people with CF interacted with the CF MDT, CF services and how they navigated the shift toward living differently with CF and also taking responsibility for self‑management of a healthy lifestyle. ‘It's sort of a historical thing as well. Always being told that they (patients) were really unwell, and that they couldn't do these kinds of things, and actually a lot of them are better now. But they still have that mindset because they've been told for years, they're really unwell. They still get that mindset that actually, I am still quite unwell, like, should I be doing this that kind of thing as well. (Physio 06)’ ‘I think, or they were blaming, blaming Kaftrio™ and things like that as well. It's looking for responsibility, isn't it? But ultimately the person is responsible for themselves. It's hard to sometimes do that.’ (Diet 01) Long established and ingrained diet and physical activity habits, previously appropriate for managing CF, were now recognised as contributing to health issues similar to those encountered in the non-CF population. ‘ But some of our patients are getting older, and if they've been sedentary because of the respiratory and function previously, then the predisposed to heart disease, and we've had a couple that have had heart problems ’(Physios04) ‘We had a chap in clinic recently whose weight has gone up, blood pressure had gone up, his abdominal girth had gone up, which he was most upset about. And when we did the sleep apnoea scoring, he scored enough that we had to say to him he shouldn't be driving so he's now waiting on a sleep study for sleep apnoea and some of it could be resolved because of his weight.’ (CNS 03) The influence of HEMT on body image was an important topic to participants. They described how the same societal and cultural body image ideals affected the CF as the non-CF population. This influenced how patients responded to weight gain and changes to their body image following HEMT. They had observed that some men responded more positively to weight gain then women. ‘I am seeing men being happier to be bigger, happier, to sort of fill out that frame because they never did. They will, especially the ones that always, you say, always used to be like Skinny. I'd never be able to like bulk out.’ (Diet08) Although not universal for some women and men weight gain meant they no longer met societal ideals for thinness leading to dissatisfaction. Moreover, younger patients tended to be influenced by ‘thin’ body image ideals and fitness trends portrayed on social media, which normalise exercise and gym attendance. ‘So, there's been a lot of lot of body image. And I've had a lot of tears talking about weight, and how people feel about the weight and putting weight on and a lot from men as well as women because one of my chaps who's very distressed about it’ (Diet04). ‘Like Instagram's full of gym influencers, like everyone's selling yoga pants everywhere. You know it. It is more of a cool thing to be into exercise. ‘It's really. It’s really in fashion now to be very skinny’ (Diet 08) HCPs had also experienced patients not wanting to commence HEMT, discontinuing, or pausing treatment because of weight gain. ‘I've seen someone in clinic this week who has stopped Kaftrio entirely ordered Wegovy or whatever off the Internet and is going to prioritize that over, Kaftrio, she said. If I can take both, I'll take both. But that's the priority, because her BMI is 44, and she's got it down to 40 now, with the Wegovy.’ (Doctor 03) ‘I did speak to somebody last week who put his modulators on hold, so he decided to come off them for a few months to try and lose some weight’ (CNS 04). Participants recognised they had limited evidence to support advice about weight loss and/or the target BMI for people with CF taking modulators. There was also limited clarity regarding the long‑term impact of overweight and obesity on the risk of developing associated co‑morbidities in CF. ‘I think, a really clear understanding of the benefits like, I know we know the benefits of weight and the general population. But is it the same in CF like, can I say if you lose 10%? This is this is what you're doing to your long-term risk. So, because if we were really strong in our convictions about them, yeah, I feel it's a bit difficult’ (Diet 09) Discussion Specialist CF healthcare services have been faced with a significant change in the health needs of patients since the introduction of HEMT. Patients commenced HEMT, ETI, during the Covid 19 Pandemic at time when they were self-isolating, and CF services were delivered virtually. Although, weight gain was a notable concern since the introduction of CFTR modulator therapies ( 44 – 47 )., CF HCPs did not anticipate the speed and scale of the impact. They perceived shielding had been a contributing factor( 48 ) particularly as weight gain and reduced physical activity during national Covid 19 lockdowns has been reported in European CF populations and not all were prescribed HEMT ( 49 , 50 ). Over the same period unhealthy dietary behaviours and reduced physical activity were reported in non-CF populations although most studies depended on self-report survey evidence and levels of weight gain varied according to sex, age and baseline body mass index (BMI) ( 51 – 54 ). UK primary care data indicated that most adults remained in the same BMI category after lockdown, but younger adults and approximately 12% of women moved into a higher BMI category. ( 55 ). American health records showed a similar profile of modest weight increases in women, younger individuals, and those already obese. This suggests that the availability of ETI during the Covid 19 pandemic was related to the increased likelihood that people with CF experienced significantly more weight gain. The long-standing relationships between CF HCPs and their patients had a considerable influence on how CF HCPs approached weight management discussions. These relationships, built over years of sustained contact with the multidisciplinary team, gave CF HCPs confidence that they felt knew their patients well and therefore could tailor advice to individual needs whereas there was also a recognition that this familiarity made it more difficult for them to the initiate weight-management conversations over concerns they would disrupt comfortable relationships. Several factors appeared to contribute to this hesitancy. Discomfort initiating a conversation that could be perceived as negative. Dietetic advice to eating less calories was in opposition to historical health messaging about eating high-calorie, palatable foods. Physiotherapists similarly reported hesitancy to link exercise advice to weight management, unless it was directly asked for by the patient, which often softened the way this advice was presented. When patients raised concerns about their weight to clinical nurse specialists, they empathised and offered support but did not envisage they had a role in providing weight management advice, and these contacts were a missed opportunity. Hence the patient-healthcare professional relationship could both facilitate and act as a barrier to weight management conversations ( 56 – 58 ). CF HCPs described distinct professional boundaries regarding weight management advice. This professional boundedness could also serve as a barrier for addressing weight management. Dietitians largely felt more confident initiated weight related conversations, as they viewed weight management as part of their professional role. Physiotherapists took the lead in providing exercise advice, with both disciplines working collaboratively at times. This led to the responsibility for weight management largely being deferred to dietitians by the other HCPs who preferred the less risky, possibly confrontational, option of in a support and reinforcement capacity. Evidence suggests successful weight management requires coordinated input from all healthcare professionals not reliance on a single profession, an approach shown to be effective in preventing non‑communicable diseases( 59 , 60 ). Whilst existing collaborative CF MDT working relationships and contributions were perceived as transferable to weight management, dietitians emphasised that agreement was needed on what that collaborative multidisciplinary approach was in order to provide effective weight management. Further this might extend beyond traditional CF team roles. Clinical nurse specialists similarly recognised that, as lifestyle-related comorbidities are expected to become more prevalent as the CF population ages, staffing and skill mix might need to adapt in response to future needs. Post-modulator overweight and obesity posed several challenges for CF HCPs. Many felt their skills were transferable to weight management whereas some expressed a need for further training to optimise service provision. Despite developing considerable experience of managing overweight problems in CF, dietitians voiced feeling less confident, and required more training, in the management of patients with severe obesity. Concerns over knowledge and skill limitations, and lack of confidence, to broach weight management in consultations with patients is frequently reported by HCPs in primary care ( 58 , 61 ). Likewise has been highlighted in an international survey of CF Dietitians, with 86 out of 102 dietitians surveyed indicating they would benefit from more training in weight management( 62 ). Dietitians have also expressed concerns that incorporating weight management advice and monitoring would add further to patient treatment burden, a known area of concern voiced by CF patients( 63 ). This hesitancy may have been compounded by limited evidence on the impact of overweight and obesity in this population to guide their clinical practice, a concern reported internationally ( 62 , 64 ). Participants also suggested some patients lacked motivation to adopt lifestyle changes after starting HEMT. This had the effect of reducing their motivation to persist with weight management advice, particularly when faced with limited response( 61 , 65 ). In contrast, patient-initiated discussions were welcomed, as they indicated clear motivation and readiness to engage in weight management. A number of organisational challenges linked with the current CF model of care were felt to work against effectively addressing emerging co-morbidities. These included limited time available during busy MDT clinics to deliver behaviour change interventions, competing clinical priorities over weight management, and workforce capacity for home visits. Also, CF MDT clinics are designed to prevent cross infection this creates a logistical challenge as patients need to meet multiple HCPs separately to review their case. This offers reduced opportunities for extended consultation time required for weight management. Likewise reduced frequency of inpatient admissions decreases opportunities for introducing or reinforcing physio supported exercise interventions. As a consequence, outpatient delivery constrained by time, access to equipment and referral to standard pulmonary rehabilitation classes is not appropriate as they are not tailored for the needs of people with CF. Other structural organisation challenges include absence of clear referral pathways to MSK and eating disorder services yet there was a growing recognition that patients with CF increasingly require support from these services. Possibly not a unique challenge as time and resources are commonly reported in the literature as barriers to delivering weight management by HCP in CF and primary care ( 56 , 66 , 67 ) but needs investment or reallocation of resources if to be tackled effectively. Despite these challenges some CF HCPs in this study had started to revision services in response to changed needs. These included offering group, one-to-one in person or virtual appointments outside of MDT clinics with variable success. The CF HCPs felt a range of options was required to offer choice, but patients had limited time for additional appointments and their attendance at virtual exercise sessions, introduced during the COVID 19 pandemic, had decreased despite offering convenience and being judged more acceptable to patients ( 68 , 69 ) . This study captured CF Services undergoing a fundamental transition from predominantly acute care provision dealing with patients experiencing life threatening events to a long term, largely outpatient service managing a chronic condition. This shift requires adjustment not only from people with CF whose health trajectories have significantly changed with HEMT, but also from CF HCPs who are adapting their roles and relationships in response to their patients’ evolving needs. Similar shifts have been observed in HIV. Advances in antiretroviral therapy have transformed HIV from an acute, inpatient managed illness into a chronic condition of multimorbidity delivered primarily through outpatient and integrated care models( 70 , 71 ). In the UK 64% of adults are living with overweight and obesity, seven million are affected by cardiovascular disease and a third have MSK conditions ( 72 – 74 ). As a results of HEMT, and as people with CF live longer, the prevalence of co-morbidities such as overweight and obesity, cardiovascular and cancer will move towards levels seen in the non CF population ( 75 , 76 ). CF services will increasingly need to focus on preventing, screening and managing these conditions. The most effective model of care for patients, whether through specialist services or through developing referral pathways with primary and non-CF services remains to be determined. The European Cystic Fibrosis Standards of Care ( 8 )recommend working in partnership with primary care to screen for age-related co-morbidities, emphasising the importance of delivering care in the most appropriate setting for the individuals. This aligns with the recently published NHS policy paper ‘Fit for the Future: 10 Year Health Plan for England which sets out plans to pivot healthcare out of hospital and into primary care settings ( 77 ). The use of the socioecological model enabled the individual, interpersonal, organisational, societal, cultural and scientific evidential influences of HEMT on the existing model of CF care to be characterised and their interrelated influences explored. As services continue to evolve, there is a clear need for HCP training and development to support the effective delivery of weight management and the promotion of positive healthy lifestyle behaviours. This evolution also requires traditional role boundaries to shift to a more collaborative, multidisciplinary approach to weight management. Conclusions In the post-modulator era, CF specialist services are clearly in transition and need to continue to adapt to meet new challenges. Evolution toward adopting a chronic-disease model incorporating a healthy lifestyle approach to the prevention of co-morbidities associated with overweight and obesity as the CF population ages. This re-visioning will take time to implement the necessary targeted training, role development, staffing and infrastructure. Further research is required to identify effective behaviour change interventions to establish optimal nutrition and exercise outcomes for people prescribed HEMT. Strengths and Limitations Interviews were conducted virtually which enabled more participants from across the UK to participate. Whilst some suggest virtual interviews produce less data overall, the quality and richness of interviews using both modes were comparable and appeared acceptable to participants ( 78 – 80 ). The one-to-one interviews generated more detailed personal accounts, although covered a narrower range of topics. Focus groups encouraged broader discussion through enabling participants to share experiences during group discussions, but some participants possibly those with less clinical experience may have felt hesitant to share their views alongside more experienced professionals( 81 ). This study only captured the views of doctors, dieticians, physiotherapists, and nurses. A notable absence was psychologists, who play a significant role in the MDT delivering CF services, although every effort was made to recruit them. The importance of psychological input to CF services was raised by participants. Their contribution and insights to the management of overweight and obesity in this population would be valuable in reframing services and future studies. Abbreviations BMI – body mass index CF – cystic fibrosis CFTR – cystic fibrosis transmembrane regulator CNS- clinical nurse specialist ETI- elexacaftor/tezacaftor/ivacaftor HCP – health care professional HEMT- highly effective modulator therapy MDT – multidisciplinary team NHS- National Health Service PERT – pancreatic enzyme replacement therapy Declarations Ethics approval and consent to participate. Ethical approval was granted by the University of Birmingham Research Ethics Committee (ERM_1717). The study was carried out in accordance with the Declaration of Helsinki and the principles of Good Clinical Practice. Written informed consent was obtained from all participants. Consent for publication Not Applicable. Availability of data and materials The data sets and analysis of the current study are available at University of Birmingham UBIRA eData repository. https://doi.org/10.25500/edata.bham.00001503 Competing Interests The authors declare that they have no competing interests. Funding This project is funded by the National Institute for Health and Care Research (NIHR) under its HEE/NIHR Doctoral Fellowship scheme [Grant Reference Number NIHR301286 to Joanne Barrett]. Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Methods' section for further details. Author Contributions JB: conceptualisation; methodology; investigation; data curation; writing, original draft; project administration; funding acquisition. AET: conceptualisation; methodology; writing, review, and editing; supervision; guarantor. SAMF: conceptualisation; methodology; writing, review, and editing; supervision. AT: review and editing; supervision. HW: review and editing; supervision. Acknowledgements The authors acknowledge the support of the National Institute for Health and Care Research (NIHR) Research Delivery Network for facilitating study set up recruitment and delivery. The authors would also like to thank the NIHR for funding this project, the health care professional participants, The More Life with CF Patient Advisory Group and Lead Partners Mrs Jane Bull and Mrs Carly Beale. Patient and Public Involvement The PPI plan for this research has been guided by the NIHR INVOLVE National Standards for Public Involvement and developed in collaboration with people living with CF and CF HCPs(82) . Prior to obtaining research funding, consultation with CF HCPs supported this research as a high priority for their clinical practice. CF HCP informed the study design, participant information, and development of the semi structured interview guide. Author Information ORCID iDs J Barrett - https://orcid.org/0000-0002-5601-4028 S A Fenton - https://orcid.org/0000-0002-3732-1348 A Turner - https://orcid.org/0000-0002-5947-3254 AE Topping http://orcid.org/0000-0002-0111-2341 H White - https://orcid.org/0000-0002-9716-3134 References Elborn JS. Cystic fibrosis. The Lancet. 2016;388(10059):2519-31. Cystic Fibrosis Trust.Standards for the Clinical Care of Children and Adults with Cystic Fibrosis in the UK. 2024. Third ed. London. UK. Burgel P-R, Southern KW, Addy C, Battezzati A, Berry C, Bouchara J-P, et al. Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues. Journal of Cystic Fibrosis. 2024;23(2):187-202. Johnson C, Butler SM, Konstan MW, Morgan W, Wohl MEB. Factors Influencing Outcomes in Cystic Fibrosis: A Center-Based Analysis. Chest. 2003;123(1):20-7. Cystic Fibrosis Trust. Nutritional Management of Cystic Fibrosis. 2016. 2nd Edition ed. London: Cystic Fibrosis Trust. National Institute forHealth and Care Excellence.Cystic fibrosis: diagnosis and management. NICE guideline [NG78]. [2017]. NHS England. National Programmes of Care and Clinical Reference Groups. Specialised Respiratory.[2024] [Available from: https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/specialised-respiratory/. Gramegna A, Addy C, Allen L, Bakkeheim E, Brown C, Daniels T, et al. Standards for the care of people with cystic fibrosis (CF). Planning for a longer life. J Cyst Fibros. 2024;23(3):375-87. Conway S, Balfour-Lynn IM, De Rijcke K, Drevinek P, Foweraker J, Havermans T, et al. European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre. J Cyst Fibros. 2014;13 Suppl 1:S3-22. Castellani C, Duff AJA, Bell SC, Heijerman HGM, Munck A, Ratjen F, et al. ECFS best practice guidelines: the 2018 revision. J Cyst Fibros. 2018;17(2):153-78. Nobili RM, Duff AJA, Ullrich G, Smrekar U, Havermans T, Bryon M, et al. Guiding principles on how to manage relevant psychological aspects within a CF team: Interdisciplinary approaches. Journal of Cystic Fibrosis. 2011;10:S45-S52. Bell JM, Dwyer TJ, Cunich M, Dentice RL, Hutchings O, Jo HE, et al. Impact of cystic fibrosis multidisciplinary virtual clinics on patient experience, time commitments and costs. Internal Medicine Journal. 2024;54(5):809-16. Oppelaar MC, Emond Y, Bannier MAGE, Reijers MHE, van der Vaart H, van der Meer R, et al. Potential, Pitfalls, and Future Directions for Remote Monitoring of Chronic Respiratory Diseases: Multicenter Mixed Methods Study in Routine Cystic Fibrosis Care. J Med Internet Res. 2024;26:e54942. Vagg T, Shanthikumar S, Morrissy D, Chapman WW, Plant BJ, Ranganathan S. Telehealth and virtual health monitoring in cystic fibrosis. Current Opinion in Pulmonary Medicine. 2021;27(6). Wong CH, Smith S, Kansra S. Digital technology for early identification of exacerbations in people with cystic fibrosis. Cochrane Database of Systematic Reviews. 2023(4). Daniel HT, Rebecca CR, Peter JB. Progress in precision medicine in cystic fibrosis: a focus on CFTR modulator therapy. Breathe. 2021;17(4):210112. Trust CF. Cystic Fibrosis Trust.UK Cystic Fibrosis Registry Annual Data Report 2024. London ,UK. Ramsey BW, Davies J, McElvaney NG, Tullis E, Bell SC, Dřevínek P, et al. A CFTR Potentiator in Patients with Cystic Fibrosis and the G551D Mutation. The New England journal of medicine. 2011;365(18):1663-72. Boyle MP, Bell SC, Konstan MW, McColley SA, Rowe SM, Rietschel E, et al. A CFTR corrector (lumacaftor) and a CFTR potentiator (ivacaftor) for treatment of patients with cystic fibrosis who have a phe508del CFTR mutation: a phase 2 randomised controlled trial. The Lancet Respiratory Medicine. 2014;2(7):527-38. Elborn SJ, Ramsey BE, Boyle ME, Konstan MW, Huang X, Marigowda G, et al. Efficacy and safety of lumacaftor/ivacaftor combination therapy in patients with cystic fibrosis homozygous for Phe508del CFTR by pulmonary function subgroup: a pooled analysis. The Lancet Respiratory Medicine. 2016;4:617-26. Heijerman HGM, McKone EF, Downey DG, Van Braeckel E, Rowe SM, Tullis E, et al. Efficacy and safety of the elexacaftor plus tezacaftor plus ivacaftor combination regimen in people with cystic fibrosis homozygous for the F508del mutation: a double-blind, randomised, phase 3 trial. The Lancet (British edition). 2019;394(10212):1940-8. NHS England. Comissioning Statement. Ivacaftor, tezacaftor/ivacaftor, and elexacaftor/tezacaftor/ivacaftor for licensed and off-label use in patients with cysticfibrosis who have named mutations.[2024]. Keating C, Yonker LM, Vermeulen F, Prais D, Linnemann RW, Trimble A, et al. Vanzacaftor-tezacaftor-deutivacaftor versus elexacaftor-tezacaftor-ivacaftor in individuals with cystic fibrosis aged 12 years and older (SKYLINE Trials VX20-121-102 and VX20-121-103): results from two randomised, active-controlled, phase 3 trials. Lancet Respir Med. 2025;13(3):256-71. Keogh RH, Tanner K, Simmonds NJ, Bilton D. The changing demography of the cystic fibrosis population: forecasting future numbers of adults in the UK. Scientific reports. 2020;10(1):10660. Lopez A, Daly C, Vega-Hernandez G, MacGregor G, Rubin JL. Elexacaftor/tezacaftor/ivacaftor projected survival and long-term health outcomes in people with cystic fibrosis homozygous for F508del. J Cyst Fibros. 2023. Page A, Goldenberg A, Matthews AL. Lived experiences of individuals with cystic fibrosis on CFTR-modulators. BMC Pulm Med. 2022;22(1):42. Aspinall SA, Mackintosh KA, Hill DM, Cope B, McNarry MA. Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis. International Journal of Environmental Research and Public Health. 2022;19(10):6114. Davies SH, Wade F, Fogg H, Walsh A, Southern KW. Qualitative study exploring the views and perceptions of parents/carers of young children with CF regarding the introduction of CFTR modulator therapy (The REVEAL study; PaRents pErspectiVEs of KAftrio in chiLdren aged 2-5). BMJ Open Respir Res. 2025;12(1). Brinkmann S. Doing interviews Second edition. ed. Kvale S, editor: Los Angeles, California : SAGE Publications, 2018; 2018. Zoom Communications Inc. Zoom. USA. Rubin HJ, Rubin IS. Qualitative interviewing: the art of hearing data. 2006. p. 173-200. International QSR. NVivo version 14. Australia2023. Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC medical research methodology. 2013;13(1):117. Bradbury-Jones C. Enhancing rigour in qualitative health research: exploring subjectivity through Peshkin's I's. J Adv Nurs. 2007;59(3):290-8. Bronfenbrenner U. International Encyclopedia of Education. Ecological models of human development. . 2nd ed. Oxford: Elsevier; 1994. Maxwell JA, Mittapalli K. SAGE Handbook of Mixed Methods in Social & Behavioral Research. 2010 2023/08/07. Thousand Oaks Thousand Oaks, California: SAGE Publications, Inc. 2. Available from: https://methods.sagepub.com/book/sage-handbook-of-mixed-methods-social-behavioral-research-2e. Fletcher AJ. Applying critical realism in qualitative research: methodology meets method. International Journal of Social Research Methodology. 2017;20(2):181-94. Creswell JW, Miller DL. Determining Validity in Qualitative Inquiry. Theory into practice. 2000;39(3):124-30. Public Health England. Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19. 2020. Nazareth D, Sumner C, Daniels J, Mathews J, Hyde G, Walshaw M. Managing an adult CF population in the COVID-19 pandemic—1 year on. QJM: An International Journal of Medicine. 2021;115(8):521-4. Clarke E, Taylor J, Watson P, Freeston J, Jones A, Peckham D, et al. Prevalence and Distribution of Musculoskeletal Symptoms in Cystic Fibrosis and Impacts on Daily Life. Pediatric Pulmonology. 2025;60(1):e27418. Quick VM, Byrd-Bredbenner C, Neumark-Sztainer D. Chronic Illness and Disordered Eating: A Discussion of the Literature. Advances in Nutrition. 2013;4(3):277-86. Petropoulou A, Bakounaki G, Grammatikopoulou MG, Bogdanos DP, Goulis DG, Vassilakou T. Eating Disorders and Disordered Eating Behaviors in Cystic Fibrosis: A Neglected Issue. Children [Internet]. 2022; 9(6). Petersen M.C. BL, Wallendorf M.,Litvin M. Effect of elexacaftor-tezacaftor-ivacaftor on body weight and metabolic parameters in adults with cystic fibrosis. Journal of Cystic Fibrosis. 2022;21:265-71. Harindhanavudhi T, Wang Q, Dunitz J, Moran A, Moheet A. Prevalence and factors associated with overweight and obesity in adults with cystic fibrosis: A single-center analysis. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2019. Salvatore D, Padoan R, Amato A, Salvatore M, Campagna G, On Behalf Of The Italian Cf Registry Working G. Nutritional Trends in Cystic Fibrosis: Insights from the Italian Cystic Fibrosis Patient Registry. J Clin Med. 2024;13(13). Szentpetery S, Fernandez GS, Schechter MS, Jain R, Flume PA, Fink AK. Obesity in Cystic fibrosis: prevalence, trends and associated factors data from the US cystic fibrosis foundation patient registry. J Cyst Fibros. 2022;21(5):777-83. Bailey J, Rozga M, McDonald CM, Bowser EK, Farnham K, Mangus M, et al. Effect of CFTR Modulators on Anthropometric Parameters in Individuals with Cystic Fibrosis: An Evidence Analysis Center Systematic Review. Journal of the Academy of Nutrition and Dietetics. 2020. Boni A, Murciano M, De Luca F, Rizzo V, Cappelli C, D'Alù V, et al. COVID-19 Lockdown Impacts Among Patients with Cystic Fibrosis: An Italian Regional Reference Centre Experience. Front Biosci (Landmark Ed). 2022;27(6):178. Radtke T, Haile SR, Dressel H, Benden C. Recommended shielding against COVID-19 impacts physical activity levels in adults with cystic fibrosis. Journal of Cystic Fibrosis. 2020;19(6):875-9. Dicken S.J. MJJ, Newberry Le Vay J, Beard E, Kale D, Herbec A, Shahab L. . Impact of COVID-19 Pandemic on Weight and BMI among UK Adults: A Longitudinal Analysis of Data from the HEBECO Study. Nutrients. 2021;24(9). McCarthy H, Potts HWW, Fisher A. Physical Activity Behavior Before, During, and After COVID-19 Restrictions: Longitudinal Smartphone-Tracking Study of Adults in the United Kingdom. J Med Internet Res. 2021;23(2):e23701. Stephanie S, Mike T, Mark T, Jae S, Yvonne B, Laurie B, et al. Changes in physical activity and sedentary behaviours from before to during the COVID-19 pandemic lockdown: a systematic review. BMJ Open Sport & Exercise Medicine. 2021;7(1):e000960. González-Monroy C, Gómez-Gómez I, Olarte-Sánchez CM, Motrico E. Eating Behaviour Changes during the COVID-19 Pandemic: A Systematic Review of Longitudinal Studies. International Journal of Environmental Research and Public Health [Internet]. 2021; 18(21). Zaccardi F, Byrne K, Khunti K, Kloecker D, Reynoso R, Shabnam S, et al. The impact of COVID-19 lockdowns on the body mass index of people living with obesity: A UK retrospective cohort study using the UK Clinical Practice Research Datalink. Obesity Research & Clinical Practice. 2023;17(6):468-76. Snowball JE, Flight WG, Heath L, Koutoukidis DA. A paradigm shift in cystic fibrosis nutritional care: Clinicians' views on the management of patients with overweight and obesity. J Cyst Fibros. 2023;22(5):836-42. Chisholm A, Hart J, Lam V, Peters S. Current challenges of behavior change talk for medical professionals and trainees. Patient Educ Couns. 2012;87(3):389-94. Blackburn M, Stathi A, Keogh E, Eccleston C. Raising the topic of weight in general practice: perspectives of GPs and primary care nurses. BMJ Open. 2015;5(8):e008546. Mitchell P WM, Golden R, McNellis B, Okun S, Webb C. E. , Rohrbach V, Von Kohorn I, editor Core Principles & Values of Effective Team-Based Health Care. Discussion Paper. Institue of Medicine of the National Academies; 2012; Washington, DC. Jennings C, Astin F. A multidisciplinary approach to prevention. European Journal of Preventive Cardiology. 2017;24(3_suppl):77-87. Bornhoeft K. Perceptions, Attitudes, and Behaviors of Primary Care Providers Toward Obesity Management: A Qualitative Study. J Community Health Nurs. 2018;35(3):85-101. Snowball J, Collins S, Smith C, Lynch V, Barrett J, Hickson M. P330 Navigating the unknown an international survey of current dietetic practices for overweight and obesity in people with cystic fibrosis. Journal of Cystic Fibrosis. 2024;23:S169-S70. Rowbotham NJ, Smith S, Leighton PA, Rayner OC, Gathercole K, Elliott ZC, et al. The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax. 2018;73(4):388-90. Leonard A, Bailey J, Bruce A, Jia S, Stein A, Fulton J, et al. Nutritional considerations for a new era: A CF foundation position paper. Journal of Cystic Fibrosis. 2023. Bräutigam Ewe M, Hildingh C, Månsson J, Lydell M. Primary care nurses’ perceptions and experiences of patients being overweight or obese as well as visions and attitudes about working with lifestyle issues: a qualitative interview study. BMC nursing. 2021;20(1):1-170. Warr W, Aveyard P, Albury C, Nicholson B, Tudor K, Hobbs R, et al. A systematic review and thematic synthesis of qualitative studies exploring GPs' and nurses' perspectives on discussing weight with patients with overweight and obesity in primary care. Obesity Reviews. 2021;22(4):e13151. Jeffers L, Manner J, Jepson R, McAteer J. Healthcare professionals’ perceptions and experiences of obesity and overweight and its management in primary care settings: a qualitative systematic review. Primary Health Care Research & Development. 2024;25:e5. Tomlinson OW, Saynor ZL, Stevens D, Urquhart DS, Williams CA. The impact of COVID-19 upon the delivery of exercise services within cystic fibrosis clinics in the United Kingdom. The Clinical Respiratory Journal. 2022;16(4):335-40. Morrison L, McCrea G, Palmer S. Online activity – A beaming good initiative! Delivering alternative exercise opportunities for people with cystic fibrosis. Physiotherapy Theory and Practice. 2024;40(7):1609-15. World Health O. WHO guideline on HIV service delivery Geneva: WHO; 2025. Jones HT, Lynch L, Barber TJ, Rattue M, Waters LJ, Asboe D, et al. What services, interventions and support are available for People with HIV in England to manage their overall health and wellbeing? A scoping review. HIV Med. 2025;26(7):1004-33. Office for Health Improvement and Disparities . Obesity Profile: short statistical commentary [May 2024] [Available from: https://www.gov.uk/government/statistics/update-to-the-obesity-profile-on-fingertips/obesity-profile-short-statistical-commentary-may-2024. NHS England. Elective Care Transformation Solutions. Best Practice Solutions.Musculoskeletal Health [2024] [Available from: https://www.england.nhs.uk/elective-care-transformation/best-practice-solutions/musculoskeletal/#:~:text=Over%2020%20million%20people%20in,quality%20of%20life%20and%20independence. NHS England. Our work. Living well, ageing well and tackling premature mortality. Cardiovascular Disease (CVD).[2024] [Available from: https://www.england.nhs.uk/ourwork/clinical-policy/cvd/#:~:text=CVD%20affects%20around%20seven%20million,as%20the%20'high%20risk%20conditions'. Fardouly J, Vartanian LR. Social Media and Body Image Concerns: Current Research and Future Directions. Current Opinion in Psychology. 2016;9:1-5. World Health O. Obesity and overweight. . 2018. Department of HaSC. Fit for the Future:10 Year Health Plan for England. In: Service NH, editor. 2025. Kite J, Phongsavan P. Insights for conducting real-time focus groups online using a web conferencing service [version 2; peer review: 2 approved]. 2017;6(122). Abrams KM, Wang Z, Song YJ, Galindo-Gonzalez S. Data Richness Trade-Offs Between Face-to-Face, Online Audiovisual, and Online Text-Only Focus Groups. Social Science Computer Review. 2014;33(1):80-96. Archibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using Zoom Videoconferencing for Qualitative Data Collection: Perceptions and Experiences of Researchers and Participants. International Journal of Qualitative Methods. 2019;18:1609406919874596. Freeman T. 'Best practice' in focus group research: making sense of different views. J Adv Nurs. 2006;56(5):491-7. Engagement NCf, Dissemination. UK Standards for Public Involvement. 2019. Contract No.: Report. Additional Declarations No competing interests reported. Supplementary Files CodingFramework.docx NavigatingChangeUKspecialisedadultcysticfibrosisservicedeliveryintheHEMTfocusgroupschedule.pdf Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 26 Apr, 2026 Reviews received at journal 21 Apr, 2026 Reviews received at journal 17 Apr, 2026 Reviewers agreed at journal 15 Apr, 2026 Reviewers agreed at journal 14 Apr, 2026 Reviewers agreed at journal 09 Apr, 2026 Reviewers agreed at journal 09 Apr, 2026 Reviewers invited by journal 07 Apr, 2026 Editor assigned by journal 06 Apr, 2026 Editor invited by journal 13 Mar, 2026 Submission checks completed at journal 11 Mar, 2026 First submitted to journal 11 Mar, 2026 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9020027","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":621648735,"identity":"a2b042ac-3422-4719-9473-99f9683ed1a5","order_by":0,"name":"Joanne Barrett","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABE0lEQVRIiWNgGAWjYBACxhk8jA8SKmxAbAMQkWAAk5LArYXZ4MOZNAYesJYEIrQwSPCwSc5sO0yCFubZvcekedjO29tLJG98XPiDIc+c/XQCw48ahsSZDTgcNudcsjUPz+3EHom0YuMZCQzFlj25Gxh7jjEkzsbplxzD2zwStxN4JHLMpHkSGBI3HMjdwMDbwJA4D7cWA2keg3P2QC3mv8Fazr/dwPgXvxYjyRkJBxh7gLYwg7XcyN3ADLIFp8OAfjH4cCA5sefMs2JpnjSJYoMbbzccljkmYYzL+4azew8+SPxnZ8/enrzxM4+NTZ7B+dyND9/U2MjOOIBDC5pRkMg4gCciGeRxyoyCUTAKRsEogAEAYH1c0E96vXkAAAAASUVORK5CYII=","orcid":"","institution":"University of Birmingham","correspondingAuthor":true,"prefix":"","firstName":"Joanne","middleName":"","lastName":"Barrett","suffix":""},{"id":621648736,"identity":"70517f14-ae0b-4798-9b54-0bef679d18cb","order_by":1,"name":"Sally Amelia May Fenton","email":"","orcid":"","institution":"University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Sally","middleName":"Amelia May","lastName":"Fenton","suffix":""},{"id":621648737,"identity":"f0e0f9eb-56b8-4bf5-aafc-78ee342147a9","order_by":2,"name":"Alice Margaret Turner","email":"","orcid":"","institution":"University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Alice","middleName":"Margaret","lastName":"Turner","suffix":""},{"id":621648738,"identity":"988e0a89-1ca4-4b12-a0f1-693c60c93dda","order_by":3,"name":"Helen White","email":"","orcid":"","institution":"Leeds Beckett University","correspondingAuthor":false,"prefix":"","firstName":"Helen","middleName":"","lastName":"White","suffix":""},{"id":621648739,"identity":"9bbfaa08-84b3-41b4-a739-cedccb29880e","order_by":4,"name":"Anne Elizabeth Topping","email":"","orcid":"","institution":"University of Birmingham","correspondingAuthor":false,"prefix":"","firstName":"Anne","middleName":"Elizabeth","lastName":"Topping","suffix":""}],"badges":[],"createdAt":"2026-03-03 12:08:14","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9020027/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9020027/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":106994283,"identity":"cbe4608e-86f8-4da2-998e-caed80174888","added_by":"auto","created_at":"2026-04-15 15:07:17","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":476212,"visible":true,"origin":"","legend":"\u003cp\u003e\u0026nbsp;See image above for figure legend.\u003c/p\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e","description":"","filename":"1.png","url":"https://assets-eu.researchsquare.com/files/rs-9020027/v1/2be9cb8906a1499473e3eb48.png"},{"id":106995009,"identity":"d1850ea3-851c-44fc-8d05-4c35de3d6e6c","added_by":"auto","created_at":"2026-04-15 15:21:16","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1658675,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9020027/v1/073d9b92-d152-41b1-98b0-3726ac9dd0b7.pdf"},{"id":106901966,"identity":"660a3c29-0848-4222-b123-a79c0c483011","added_by":"auto","created_at":"2026-04-14 15:07:25","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":27080,"visible":true,"origin":"","legend":"","description":"","filename":"CodingFramework.docx","url":"https://assets-eu.researchsquare.com/files/rs-9020027/v1/7acff53149b3c1aeeffcd82f.docx"},{"id":106961074,"identity":"592d2eec-b1cc-46f0-b7db-5e8cda799cd0","added_by":"auto","created_at":"2026-04-15 09:24:10","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":102764,"visible":true,"origin":"","legend":"","description":"","filename":"NavigatingChangeUKspecialisedadultcysticfibrosisservicedeliveryintheHEMTfocusgroupschedule.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9020027/v1/ce1731fa09ba94890c893d33.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Navigating Change – UK specialised adult cystic fibrosis service delivery in the highly effective modulator therapy era","fulltext":[{"header":"Background","content":"\u003cp\u003eCystic fibrosis is a complex multisystem genetic disorder that primarily effects the respiratory and gastrointestinal systems (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Patients with cystic fibrosis (CF) have complex health needs that require close monitoring by a specialist multidisciplinary team (MDT) of healthcare professionals (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). Respiratory exacerbations and non-pulmonary complications require timely intervention to prevent deterioration and minimise disease progression. (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Key aspects of CF care include the management of chronic respiratory disease with antibiotics, chest physiotherapy, exercise, and the optimisation of nutritional status. The majority of patients require pancreatic enzyme replacement therapy (PERT) to manage malabsorption and maldigestion because of pancreatic insufficiency, and are normally recommended to eat high energy diet to maintain a body mass index (BMI) at the recommended targets of 22kg/m\u003csup\u003e2\u003c/sup\u003e for women and 23kg/m\u003csup\u003e2\u003c/sup\u003e for men(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eExisting CF specialist centres in England operate based on UK standards of care and National Health Service (NHS) service specifications; these benchmark staffing requirements, facilities, patient access, monitoring, and outcome data(\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Patients receive their care at specialist centres in line with recommendations and this has been associated with improved clinical outcomes (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Specialist centre care is delivered by a multidisciplinary team (MDT) including specialist doctors, clinical nurse specialists, physiotherapists, dietitians, pharmacists, psychologists, and social workers all trained and experienced in managing people with this complex disease. CF multidisciplinary teams (CF MDT) provide holistic patient care, often caring for patients throughout their lifespan hence develop long-standing relationships (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eSpecialised CF centre services are delivered via hospital inpatient care, in-person, and virtual outpatient clinics and through outreach services in patients\u0026rsquo; homes. Virtual outpatient clinics alongside remote monitoring introduced during the COVID-19 pandemic have remained in place. These have been found to be acceptable to most patients and health care professionals, as they reduce the frequency of hospital visits, decrease time way from work or study, and lower the costs associated with long-distance travel to regional CF centres.(\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).However, the benefits on clinical outcomes have been variable and many centres are returning to in person care due to concerns over poor patient adherence to home monitoring and early symptom awareness by patients which may be harder for patients to recognise on HEMT (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis model of care, the introduction of newborn screening and treatment advancements have improved the health and life expectancy of patients with CF over the last 35 years. However the introduction of HEMT has led to the most significant increase in median life expectancy to 66.2 years for patients in the UK(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eHEMT are the most recent generation of CFTR modulator therapies, which treat the underlying cause of cystic fibrosis by correcting the defective production and function of the cystic fibrosis transmembrane regulator protein. The first CFTR modulator monotherapy, ivacaftor (Kalydeco\u0026reg;) became available in 2012 to patients 12 years and over who were heterozygous for the G551D mutation in England (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Eligibility was later broadened to include other class III mutations, infants, and younger children. This was followed in 2019 by the introduction of dual therapy ivacaftor/tezacaftor (Symkevi\u0026reg;) for patients 12 years and over who were homozygous for the most common delF508 mutation or heterozygous with a residual function mutation.(\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). In 2020, elexacaftor/tezacaftor/ivacaftor (Kaftrio\u0026reg;(ETI) was the first triple CFTR modulator therapy, and HEMT to become available to patients who were homozygous for the delF508 mutation with the majority of patients in the UK eligible for this treatment from the age of 2 years (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). ETI has recently been succeeded by vanzacaftor/tezacaftor/deutivacaftor (Alyftrek\u0026reg;) which although only shows small additional improvements in health outcomes has the added benefit of once-a-day dosing for patients (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe impact of these treatments on the health trajectory and life expectancy of patients with cystic fibrosis is challenging the existing model of care delivered by adult specialist centre services. As more patients with CF live into older age, have fewer acute life threatening events, adult CF services will need to adapt, or may already be adapting to meet the changing and emerging health care needs of their patients (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eTo date, qualitative studies have focused on the impact of HEMT on patient\u0026rsquo;s own health and wellbeing (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e), as well as clinician and patient perceptions of decision making regarding the start of HEMT. Parental perceptions of HEMT for their child and its impact on the types of support they required has emphasised the psychological support and the reformation of service provision required(\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e).This study aimed to capture this change by exploring with CF health care professionals (CF HCP) experiences of the impact HEMT on adult CF healthcare services and how the model of care is adapting to the changing health needs of service users.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003e\u003cem\u003eStudy Design\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA qualitative descriptive semi-structured interview study design (29) was used to explore CF HCPs experiences of delivering weight management in the context of a specialist CF service since the introduction of CFTR modulator therapies. The semi‑structured interview guide was informed by the knowledge gaps identified in the existing literature, and the research team\u0026rsquo;s clinical and methodological expertise. CF healthcare professionals reviewed the draft guide, and the questions were refined in response to their feedback ( see supplementary file).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eStudy Participants\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA purposive sample of CF HCPs were recruited via communication with professional organisations, groups and social media between February and July 2024. Participants were screened and deemed eligible to take part if they were a physician, physiotherapist, dietitian, clinical nurse specialist, or psychologist practicing in a UK adult CF centre. Recruitment continued until no new themes emerged and data saturation was reached (29).\u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eData Collection\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eQualitative semi-structured online focus groups and individual interviews were conducted between April and September 2024 with 23 CF HCPs working at UK adult CF centres. Interviews were conducted by a female experienced cystic fibrosis dietitian/researcher (JB) with qualitative research experience supported by an experienced qualitative researcher (AT). Several participants were known to JB through professional networks.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo facilitate busy clinician participant attendance, interviews were delivered via videoconferencing (Zoom\u0026reg;)platform using an interview guide (30).\u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003eFocus group interviews were conducted with homogeneous groups of health care professionals and two researchers (AT/JB) whereas one-to-one interviews were conducted solely by JB. The interview guide was modified as the study progressed in response to tentative inferences(31). Interviews were video and audio\u003cstrong\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/strong\u003erecorded using the speech to text transcription facility of the videoconferencing platform. Focus group interviews lasted 56-75 minutes. One to one interview\u0026rsquo;s lasted 20 - 59 minutes. One person withdrew following agreement to participate and no reason was given.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eData Analysis\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe audio recordings of each interview were checked for accuracy and then imported into NVivo 14 to organise, code and chart the data(32).An inductive thematic framework approach was used (33). Initial independent descriptive coding of three focus group interviews with different health care professions to ensure a breadth of experience and perspectives informed the initial coding index. This coding index was developed and applied to all subsequent transcripts, with new codes added as they emerged. The framework was iteratively \u0026nbsp;refined and conceptually related codes \u0026nbsp;grouped into categories following discussion with AT.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe framework matrix was then exported into Microsoft excel\u0026copy; where \u0026nbsp;illustrative participant quotations were charted to enable the comparison of categories and codes, between and within individual participant data to identify any connections or patterns. The researcher used a reflexive approach, keeping a diary of assumptions and checking transcripts to ensure the analysis remained grounded in the participants accounts rather than personal clinical experience(34). To support rigour, themes and subthemes were then developed and further refined in discussion with a second researcher (AT).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThemes and subthemes were then mapped to Bronfenbrenner\u0026rsquo;s socio-ecological model (SEM) (35). SEM was chosen because it provides a clear framework for describing the interrelated systems, unseen mechanisms, behaviours and contextual influences through which HEMT has influenced CF healthcare services across individual and interpersonal (micro), organisational (meso) and policy levels (macro). Additionally, the chrono-system has been used to illustrate the influence of this new treatment (HEMT) highlighting how the service has changed since its introduction (36, 37).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMember Checking\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eTo verify the findings, themes and sub themes were presented to a representative sub-group (n=13) of participants during an online focus group and a series of one-to-one meetings(38). These served to confirm experiences, views and opinions had been accurately interpreted and no revisions the thematic scheme were required.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eFive focus group interviews and 8 individual interviews were conducted with 23 CF HCPs: 10 dietitians, 6 physiotherapists, 4 clinical nurse specialists and 3 doctors (1 male). Participants had a wide range of experience of between 11 and 30 years, working at 11 different UK adult CF centres. The numbers of patients managed by these specialist centres ranged from less than 150 patients to more than 300. (table 1.)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eTable 1. Participant Characteristics\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"825\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eType of Interview\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eHealth Care Professional\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eSize of adult CF centre currently practising at\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e\u003cstrong\u003enumber of years of clinical practice experience of CF\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eCNS 01\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026lt;150\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e6 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eCNS 02\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e9 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eCNS 03\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026lt;150\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e19 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eCNS 04\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e23 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 01\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e28 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 02\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e150-200\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e17 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 03\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 04\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026lt;150\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 05\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026lt;150\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e1.5 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 06\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e3.5years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 07\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e150-300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e1 year\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 08\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e4 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 09\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e10 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDiet 10\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e15 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 01\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e8 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 02\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e16 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 03\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e3 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eFG\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 04\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e150-300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e27 years\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 05\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e8 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003ePhysio 06\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e4.5 yrs\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDoctor 01\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e24 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDoctor 02\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e150-300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e30 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 97px;\"\u003e\n \u003cp\u003eOTO\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 133px;\"\u003e\n \u003cp\u003eDoctor 03\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 230px;\"\u003e\n \u003cp\u003e\u0026gt;300\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd nowrap=\"\" valign=\"top\" style=\"width: 365px;\"\u003e\n \u003cp\u003e12 years\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eCNS (clinical nurse specialist), Diet (dietitian), Physio (physiotherapist), Doctor (cystic fibrosis consultant)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFive \u0026nbsp;main themes with subthemes were identified and mapped to the micro, meso, macro and chrono levels of the socio-ecological model; existing challenges (time -chrono), generalist vs specialist\u003cem\u003e\u0026nbsp;\u003c/em\u003e(individual - micro), relationships and roles; (interpersonal - micro), model of care (organisational \u0026ndash; meso), \u003cem\u003enormalising amid uncertainty\u0026nbsp;\u003c/em\u003e(CF culture and society - macro).(table 2).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2. Themes and sub-themes within each of the five-levels mapped to the socio-ecological model (SEM)\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"1001\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eLevel within SEM\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eTheme\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eSub Themes\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eTimeline (Chrono)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eExisting challenges\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003eSignificant rapid weight gain\u003c/p\u003e\n \u003cp\u003eETI exacerbating an increasing prevalence of overweight and obesity.\u003c/p\u003e\n \u003cp\u003eWeight gain with introduction of ETI during covid 19 pandemic\u003c/p\u003e\n \u003cp\u003eUncertainties about future health implications of overweight and obesity\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIndividual CF Health Care Professionals (Micro)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eGeneralist vs Specialist\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003eImpact on clinical practice\u003c/p\u003e\n \u003cp\u003eTransferable Roles and Skills within the CF MDT for weight management\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eInterpersonal relationships with patients and the CF MDT (Micro)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eRelationships and roles\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003eValued long-term relationships with patients.\u003c/p\u003e\n \u003cp\u003eReluctance to risk upsetting patient relationships\u003c/p\u003e\n \u003cp\u003eTentative Weight Management Conversations\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eHesitance to add to the patient\u0026rsquo;s treatment burden.\u003c/p\u003e\n \u003cp\u003ePreserving professional boundaries and MDT relationships\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eOrganisational -CF Specialised Service Model (Meso)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eModel of care\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003eLimitations to delivery of behaviour change\u003c/p\u003e\n \u003cp\u003eLimited access to CF‑appropriate weight management and exercise services\u003c/p\u003e\n \u003cp\u003eFlexible access to the CF MDT and weight management choices\u003c/p\u003e\n \u003cp\u003eDeveloping services, roles and skills to meet changing patient need\u003c/p\u003e\n \u003cp\u003eFuture uncertainties of a CF specialised service\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 139px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eCF Culture and, Society (Macro)\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 286px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cem\u003eNormalising amid uncertainty\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 576px;\"\u003e\n \u003cp\u003eNavigating the shift from dependency to self-management\u003c/p\u003e\n \u003cp\u003eNormalising overweight and obesity in context on non-CF population\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSocial media influences\u0026nbsp;\u003cbr\u003eLimited evidence and guidance for clinical practice\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cstrong\u003eThe Chronosystem. Timeline\u003cem\u003e\u0026nbsp;\u0026ndash;existing challenges\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eETI therapy became available to patients in August 2020 when patients were self-isolating during the covid 19 pandemic, and CF healthcare was largely delivered virtually unless urgent or inpatient treatment was required (22, 39, 40). Surveillance of the impact of ETI was limited until remote monitoring was established, shielding ceased, and in person \u0026lsquo;normal\u0026rsquo; monitoring resumed. Then the extent of the impact on weight became apparent. This was greater than anticipated, both in terms of the number of patients who had experienced weight gain and the amount. Participants felt that self-isolation had contributed to the failure to recognise weight gain and services were unprepared for the volume of people with CF who were experiencing overweight and obesity. Some dietitians commented that ETI therapy had accelerated overweight and obesity and it was emerging as a concern prior to, and not exclusive to the introduction of modulator therapy.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I don\u0026apos;t just think it is drug. You know we were seeing overweight and obesity before Kaftrio or any of the modulators, and I think you know, as dieticians for the last 10 plus years, we\u0026apos;ve been really encouraging health, eating and exercise\u0026rsquo; (Diet 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;\u0026hellip;\u0026hellip;. there\u0026rsquo;s been a sort of a significant change and I think because of the modulators and also because when they were licensed, it was during or just after the whole lockdown period. So, I think for a lot of our patients, there was a bit of a double whammy going on.\u0026rsquo; (Diet 10)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSome voiced concerns about the long-term impact overweight and obesity would have on the health of patients and the development of co-morbidities such as cardiovascular disease.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026apos;Worried about metabolic syndrome. I\u0026apos;m worried about the blood pressure, hearts, the state of their vasculature is going to be arterial calcification and those long-term consequences. There\u0026apos;s no point saving someone\u0026apos;s life with Kaftrio\u0026reg; and then having them die of a heart attack\u0026apos; Doctor 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe Micro System. Individual CF Health Care Professionals;\u003cem\u003e\u0026nbsp;generalist vs specialist\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants described changes to their clinical practice since the introduction of ETI therapy. There was a recognition that new knowledge and upskilling was required to meet emerging health needs of their patients. They were managing more patients living with overweight and obesity, making diabetes management more complex, and central venous access devices more difficult to access. More patients were presenting with body image issues because of weight gain. HCPs suggested that many patients expressed preferring a slimmer body image. Also, advice about adopting healthy eating had unmasked issues with disordered eating behaviours and those with a dietary intake consisting of limited food variety.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;And there\u0026apos;s a lot of I think it\u0026apos;s more body image issues and kind of restrictive, more disordered eating coming to light, and within some of some of the patients. So, I guess we have quite a young cohort as well, and I think body image is quite a significant\u0026rsquo; (Diet 05)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePhysiotherapists were spending less time on airway clearance therapy but dealing with an increase in the number of patients with musculoskeletal (MSK) complications (e.g. knee or back pain). Additionally, more patients were experiencing mental ill-health, and services were supporting more CF patients through pregnancy.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;So, from a muscle skeletal point of view, you know, we do see patients come in saying, you know, you know, of experiencing more joint pain because they\u0026apos;ve, you know, put on weight. They feel like they\u0026apos;ve put on weight, or things have changed since the Kaftrio\u0026reg;. So, I\u0026apos;ve noticed that\u0026rsquo; (Physio 05)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eBoth dietitians and physiotherapists recognised they had the capabilities for delivering diet and physical activity behaviour change interventions as part of their professional training such that, supporting the increase in patients with overweight and obesity was within their skillset. Yet not all physiotherapists felt confident to advise on exercise and this related to training, personal interest and clinical experience.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;we\u0026apos;ve got really really good skills, that working on engagement, working on habits, understanding adherence, understanding change in, you know, in the face of psychological adversity. (Diet 04)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;, I will sometimes recommend that a patient specifically speaks to my colleague about exercise, because I have a feeling that he\u0026apos;s got the right skills where I\u0026apos;m lacking and that is very helpful.\u0026rsquo; (Physio 02)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eShifting dietary advice from recommending high calorie intake to healthy eating and weight management represented a significant change in routine clinical practice for specialist CF centre dietitians. Although they had the \u0026nbsp; knowledge and skillset to deliver general health eating advice some felt less confident managing obesity and those with disordered eating. navigating requests to access weight loss medications was also challenging; those who lacked knowledge or confidence typically sought training from other specialists to refresh or enhance their knowledge and skills.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;(in) general leading the weight management when we\u0026apos;ve got BMIs of low thirties. 25. But wouldn\u0026apos;t you hit that high thirty forty? I\u0026apos;m out of my depth sometimes. And I think \u0026hellip;there, are methods out there which weight management services use, and things(but) is that appropriate in CF? what can be used in CF? sort of that higher level sort of top end.\u0026rsquo; (Diet 08)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe microsystem. Interpersonal relationships with patients and the CF MDT \u0026ndash; \u003cem\u003erelationships and roles \u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe CF HCPs all discussed the importance of their relationships with patients. They valued the continuity specialist services provided and the opportunity to have long term relationships, to \u0026lsquo;\u003cem\u003ereally know\u0026rsquo;\u003c/em\u003e their patients and go on the modulator journey with them.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We have that rapport with our patients as well. So, they tend to trust us, and they will tell us kind of what\u0026apos;s appropriate for them each particular time, so we can then stage the intervention. We know them kind of lifelong. So, we have the time, and with them as well, to make those changes.\u0026rsquo; (Diet 05)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eYet they recognised the nature of patient/HCP relationships was changing with less opportunities to build relationships with virtual monitoring, and fewer (if any) sudden and acute episodes of deterioration due to better health outcomes.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;The younger people coming up (transiting from children and young people CF care) that we don\u0026apos;t see very often. Now it\u0026apos;s going to be hard for us to try to persuade, encourage guide them as much because we don\u0026apos;t have the same relationship because we don\u0026apos;t see them in hospital every 3 months. We don\u0026apos;t look after them for 2 weeks out of that 3 month. We don\u0026apos;t treat their chest twice a day. I think you know some of the limitations on our relationships are going to be greater than they perhaps were, so we might not have the same relationship to be able to encourage quite so much.\u0026rsquo; (Physio 04)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDietitian participants described hesitancy when advising patients to change their dietary habits, fearing it might add to already high treatment burden. They perceived patients lacked motivation for dietary change as they were experiencing improved health; all factors that influenced reluctance to raise concerns in consultations.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;they\u0026apos;ve (People with CF) got enough burden. Why are we burdened? Why are you trying to burden them with these extra problems? I think there\u0026apos;s a fear that we\u0026apos;re burdening people who are already quite burdened with poor health, that we\u0026apos;re adding\u0026rsquo; (Diet 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants described approaching the topic of weight management indirectly and tentatively due to concerns that a difficult conversation might compromise relationships and/or patient engagement in the service.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We\u0026rsquo;d just started seeing people again (post-covid). We had to be really careful what we said to patients, because even if you said something like Oh, you look well, people would interpret that as Oh, you mean, I\u0026apos;ve got fat and you had to sort of tread very, very carefully and with people. And sometimes just trying to avoid that? Weight words altogether as well.\u0026rsquo; (Diet 02)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;It\u0026apos;s a very delicate territory to be in, I think. Because we\u0026apos;re always going to be working with them\u0026hellip;\u0026hellip;\u0026hellip;. If I was less worried about the repercussions of that relationship that we need to maintain, I would be pushing harder. I think if you push too hard, and then, if they don\u0026apos;t want to work with you, they don\u0026apos;t want to engage. They might then say in future clinics. So, I don\u0026apos;t want to see Physio today.\u0026rsquo; (Physio 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThey also described adopting weight neutral language and trying to steer away from quantifying weight gain as CF monitoring is \u0026lsquo;numbers\u0026rsquo; driven. If patients\u0026rsquo;-initiated conversation about weight management, it gave the clinician permission to be open.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I think people find it a very personal conversation... So, you do have to, or I find that it\u0026apos;s probably easier to come at it from a health concerned perspective rather than anything else, or.......................What the patient\u0026apos;s concerns are, because otherwise they just think you\u0026apos;re getting at them. It\u0026rsquo;s the doctor having a go about (weight) so it\u0026apos;s useful to come at it from a clinical perspective (Doctor 01).\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants perceived they had different but clearly defined professional expertise in the MDT. Dietitians taking the lead on weight management and giving general physical activity yet referred patients to physiotherapists for specific exercise advice. This way of working suited physiotherapists who were more comfortable giving exercise advice framed around weight management but were not as comfortable initiating these conversations whereas dietitians were expected to take the lead on weight management.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;So, if that if they\u0026apos;ve been talking to somebody, we might let that person lead, but I think in general, the dieticians will lead on that, because I think the patients are expecting that conversation from the dieticians. So, I think our dietitian would say that she leads on most of it, which I think she was not expecting when she started.\u0026rsquo; (Doctor 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I tend to just ask them what they do at the moment and encourage whatever it is they believe they can do. I think I\u0026apos;ll often say the Physio can chat to you a little bit more because I don\u0026apos;t always know their functionality level of their breathing and things, so I\u0026apos;d never want to say. Just go for a run because you never know what they can do\u0026rsquo; (Diet 08)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eCNSs described themselves as acting as a bridge between the patient and the rest of the CF Team, steering away from giving any advice and/or recommending patients to seek weight management advice.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;If you\u0026apos;re not the dietician. You might be the person that the patient will talk to about weight, that they don\u0026apos;t want to talk to the dietician about. So, you can have that unique role of being, the confidante. And so, I guess that\u0026apos;s where the nurse has a bit of a different role, maybe, than the dietician. \u0026hellip;\u0026hellip;\u0026hellip;\u0026hellip;. So, recognizing that there\u0026apos;s something that there could be an intervention with.\u0026rsquo; (CNS 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Normally okay, they\u0026apos;ll they\u0026apos;ll normally say, oh, you know, just oh, yes, I have (gained weight). But then nothing really. After that we don\u0026apos;t. We haven\u0026apos;t kind of probably delved into anything further, they might say I\u0026apos;m trying to lose a little bit, we\u0026apos;ve probably left that to the dieticians remit really\u0026rsquo; (CNS 04)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhereas doctors normally reinforced advice given by others in the team, mindful that patients might feel overwhelmed by receiving advice from multiple team members.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We, we would have a preclinic meeting. And we might say. Okay to the dietitians do you want to bring it up? Because what we didn\u0026apos;t don\u0026apos;t want to do is feel this is someone to feel that we\u0026apos;re all asking.\u0026rsquo; \u0026nbsp; (Doctor 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe multidisciplinary approach and expertise within the CF MDT were considered by participants adaptable to the complexities of weight management. They recognised a consistent team approach to healthy lifestyle messaging was now required.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Yeah, I think it\u0026apos;s trying to get your whole team to on board to say we really need to adopt a high, healthy lifestyle approach to manage CF now, and it needs to be coming from the doctors, physios, dieticians, everyone in the team.\u0026rsquo; (Diet 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eJoint working between dietitians and physiotherapists was established , with two-way referrals part of normal practice. There was a feeling expressed that this joint approach for providing diet and physical activity advice worked well and prevented patients repeatedly discussing the same health concerns with different clinicians.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;we\u0026apos;ve had a few more and sort of patients seeking support from both. like an MDT approach from the dieticians and myself, so that we\u0026apos;ve done more. So, it\u0026apos;s like joint working with the dieticians\u0026rsquo; (Physio 05)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe meso system. Organisational - \u003cem\u003emodel of care\u003c/em\u003e \u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eVirtual clinics were now routine, partly pragmatic as avoids patient inconvenience (e.g. cost, time and for some loss of income, etc), alleviates clinic capacity issues as only one room required per clinic \u0026nbsp;and reduces infection risk. With fewer patient contacts (e.g. reduced admissions) there are fewer opportunities to deliver supervised exercise, or personalised advice, and for dietitians inevitably respiratory, diabetes or gastrointestinal complications are prioritised over weight management.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;It can be frustrating when you feel like in in those clinics, and you don\u0026apos;t have as much time to have the full in-depth conversations to peel back the layers. \u0026lsquo;In in clinic again. Clinic rooms, space we\u0026apos;re on. We know that other people are waiting to get in., (Physio 01)\u0026rsquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I will pick the patients that are. maybe the diabetes is out of control or they\u0026apos;re underweight. I would prioritise them, probably before the overweight and obese, because or if they\u0026apos;ve got like, you know, enzyme issues, they would all be higher priorities. So, the overweight and obese might be the ones that if I\u0026apos;ve got a bit of time I might see, but I might not.\u0026rsquo; (Diet 02)\u003c/em\u003e\u003cbr\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo resolve some of these issues, some dietitians had established virtual dietetic clinics, outside of the CF MDT clinics, to deliver healthy eating education and/or weight management\u003cem\u003e.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Well, we have adapted a little bit that A while ago we set up just a dietetic, only clinic that it was mostly focused for patients with diabetes, really. But we kind of call it an education clinic. So, it was. It\u0026apos;s virtual. It\u0026apos;s taking the patient out of that MDT. Clinic that was quite busy, and you flit in, don\u0026apos;t you?\u0026rsquo; (Diet 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003ePhysiotherapists reported they had continued to deliver virtual exercise classes that were initiated during the COVID pandemic or arranged one to one exercise sessions outside of MDT clinics. However, with patients being in better health their lives busier, they do not want additional appointments and attendance at online exercise classes had noticeably reduced since Covid.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I think during Covid. when everybody was shielding, we were able to implement more virtual exercise. Online activities at that point. And because people with CF were shielding and staying in the house, we definitely had a bigger surge on uptake of online classes at that point, (Physio 04)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIn recognition that every individual patient\u0026rsquo;s experience with CF modulators is different participants described how they had started to develop services to meet both the changing needs and preferences of patients However , there were resource barriers to providing responsive services. For example, several physiotherapists reported limited access to equipment for demonstrating exercise in outpatient settings, but alternatives such as NHS rehabilitation classes were unsuitable for CF service users as most were aimed at older adults.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Some people like group resource. We\u0026apos;ve had people that have gone to slimming world, weight watchers, things like that, because that\u0026apos;s what they sort of wanted to do. And for some patients it\u0026apos;s literally just spending time of them looking at their diet very individually, and giving them perhaps, some goals that are particularly related to them.\u0026rsquo; (Diet 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We get like GP exercise, referral screens and live active. And those kinds of things. But they\u0026apos;re not really. They\u0026apos;re not specifically designed for young younger people. You know, they\u0026apos;re more post cardiac, trans and post cardiac insult, or people with COPD or other respiratory problems. So, if you refer a younger person with CF. To somebody who\u0026apos;s motivated to exercise, and they often don\u0026apos;t present with them the same kind of issues that another person would have.\u0026rsquo; \u0026nbsp; (Physio 02)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eDespite the therapeutic benefit of exercise in the management of CF, many patients cannot access funding for home exercise equipment. Some apply to charitable schemes, but find they are now ineligible due to improved health status with HEMT. Local\u0026nbsp;authority\u0026nbsp;funded exercise referral schemes may not be available in all areas.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;\u0026hellip;. provision by councils and things has reduced over the last 10 years. There isn\u0026apos;t much financial support for that kind of thing, and the CF Trust used to do more exercise grants and things, and that is the there is some, but it\u0026apos;s very limited now.\u0026rsquo; (Physio 02)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMuscular skeletal (MSK) issues affecting activities of daily living are commonly experienced by CF patients (41). These issues may be related to CF, such as inflammatory arthritis, or other associated co-morbidities such as osteoporosis, diabetes nutrition, and lifestyle. Accessing specialist services to treat and manage MSK complications can be difficult and many experience long waiting times after referral.\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eIt\u0026apos;s more joint problems. I guess some of it is a sedentary lifestyle, so that you\u0026apos;re living more of a sedentary lifestyle. Then you\u0026apos;re getting a lot more sort of back pain. joint pain, those kinds of things. \u0026hellip;We have seen an increase in that. I also don\u0026apos;t know if it\u0026apos;s because people are less focused on their chest that they\u0026apos;re then saying, telling us about all these MSK issues. And so it may be that before because they were so unwell and so focused on their chest that actually they had the MSK issues. They probably wouldn\u0026apos;t be that bothered about them, whereas they\u0026rsquo;re more of a problem now\u0026rsquo; (Physio 06).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003ePatients with CF have an \u0026nbsp;increased risk of eating disorders and \u0026nbsp;disordered eating (42). \u0026nbsp; Lifelong \u0026nbsp; nutritional surveillance, frequent weight checks, a focus on weight gain and negative food-related experiences linked to gastrointestinal symptoms and poor appetite, may all contribute.(43). Dietitians reported they had been dealing with more patients with disordered eating and eating disorders that had been exacerbated, or went unrecognised, before the introduction of HEMT was now noticeable due to weight gain. In the UK access to specialist eating disorder services are limited the referral pathway for people with CF is largely uncharted and may involve delays.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We have, we have a few that we have referred to sort of just eating disorder services, but we find that it\u0026apos;s really difficult in that and they have to wait months and months and months before we even just that initial phone calls sometimes.\u0026rsquo;(Diet10)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants recognised there was a need for new roles, different skill mix or skill set across MDTs to address the emerging health needs of patients. There was some debate about whether to adopt a joint approach linking with other services or upskill existing staff to provide additional services as part of the CF service model; the later approach potentially diluting the specialist model.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;But do we have the skill set to do it? We don\u0026apos;t have the appropriate skill set, but should we be pushing ourselves? But then we\u0026apos;re removing the specialist aspect because we\u0026apos;re not specialists in that area but then they probably won\u0026apos;t end up getting to the point where they need to. So, my thing with CF is, there so many questions, and not many answers. (Physio 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;One CNS participant who worked in a CF service that had undergone a review felt there was a need to review service delivery and redirect resources.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Whereas (if) what we want to do is promote a healthy lifestyle, because we\u0026apos;ve got this new medication. Now, that\u0026apos;s actually given them (people with CF) a longer life expectancy. And so, because of that, that\u0026apos;s why we need to re reinvent our CF services.\u0026rsquo; (CNS 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhereas another thought that review might require different membership of the MDT.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;So, looking at things a bit like that, we don\u0026apos;t have an OT as part of our team, but I know from looking at other centres. They\u0026apos;ve got OTs on their team, or they\u0026apos;ve got youth workers. So, there\u0026apos;s a little bit of looking at the MDT. And maybe slicing up the cake slightly differently\u0026rsquo; (CNS 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eThe macro system.CF culture and society- \u003cem\u003enormalising amid uncertainty\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBefore ETI therapy was introduced, CF healthcare services provided care for a population of patients who experienced \u0026nbsp; severe ill health and were vulnerable to sudden, rapid, and life-threatening deterioration that required responsive treatment. Participating CF HCPs perceived that patients were still adjusting to the significant improvement in their overall health since starting HEMT. This influenced how people with CF interacted with the CF MDT, CF services and how they navigated the shift toward living differently with CF and also taking responsibility for self‑management of a healthy lifestyle.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;It\u0026apos;s sort of a historical thing as well. Always being told that they (patients) were really unwell, and that they couldn\u0026apos;t do these kinds of things, and actually a lot of them are better now. But they still have that mindset because they\u0026apos;ve been told for years, they\u0026apos;re really unwell. They still get that mindset that actually, I am still quite unwell, like, should I be doing this that kind of thing as well. (Physio 06)\u0026rsquo;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I think, or they were blaming, blaming Kaftrio\u0026trade; and things like that as well. It\u0026apos;s looking for responsibility, isn\u0026apos;t it? But ultimately the person is responsible for themselves. It\u0026apos;s hard to sometimes do that.\u0026rsquo; (Diet 01)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eLong established and ingrained diet and physical activity habits, previously appropriate for managing CF, were now recognised as contributing to health issues similar to those encountered in the non-CF population.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026lsquo;\u003cem\u003eBut some of our patients are getting older, and if they\u0026apos;ve been sedentary because of the respiratory and function previously, then the predisposed to heart disease, and we\u0026apos;ve had a couple that have had heart problems\u003c/em\u003e\u0026rsquo;(Physios04)\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;We had a chap in clinic recently whose weight has gone up, blood pressure had gone up, his abdominal girth had gone up, which he was most upset about. And when we did the sleep apnoea scoring, he scored enough that we had to say to him he shouldn\u0026apos;t be driving so he\u0026apos;s now waiting on a sleep study for sleep apnoea and some of it could be resolved because of his weight.\u0026rsquo; (CNS 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe influence of HEMT on body image was an important topic to participants. They described how the same societal and cultural body image ideals affected the CF as the non-CF population. This influenced how patients responded to weight gain and changes to their body image following HEMT. They had observed that some men responded more positively to weight gain then women.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I am seeing men being happier to be bigger, happier, to sort of fill out that frame because they never did. They will, especially the ones that always, you say, always used to be like Skinny. I\u0026apos;d never be able to like bulk out.\u0026rsquo; (Diet08)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;Although not universal for some women and men weight gain meant they no longer met societal ideals for thinness leading to dissatisfaction. Moreover, younger patients tended to be influenced by \u0026lsquo;thin\u0026rsquo; body image ideals and fitness trends portrayed on social media, which normalise exercise and gym attendance.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;So, there\u0026apos;s been a lot of lot of body image. And I\u0026apos;ve had a lot of tears talking about weight, and how people feel about the weight and putting weight on and a lot from men as well as women because one of my chaps who\u0026apos;s very distressed about it\u0026rsquo; (Diet04).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;Like Instagram\u0026apos;s full of gym influencers, like everyone\u0026apos;s selling yoga pants everywhere. You know it. It is more of a cool thing to be into exercise. \u0026lsquo;It\u0026apos;s really. It\u0026rsquo;s really in fashion now to be very skinny\u0026rsquo; (Diet 08)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eHCPs had also experienced patients not wanting to commence HEMT, discontinuing, or pausing treatment because of weight gain.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I\u0026apos;ve seen someone in clinic this week who has stopped Kaftrio entirely ordered Wegovy or whatever off the Internet and is going to prioritize that over, Kaftrio, she said. If I can take both, I\u0026apos;ll take both. But that\u0026apos;s the priority, because her BMI is 44, and she\u0026apos;s got it down to 40 now, with the Wegovy.\u0026rsquo; (Doctor 03)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I did speak to somebody last week who put his modulators on hold, so he decided to come off them for a few months to try and lose some weight\u0026rsquo; (CNS 04).\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eParticipants recognised they had limited evidence to support advice about weight loss and/or the target BMI for people with CF taking modulators. There was also limited clarity regarding the long‑term impact of overweight and obesity on the risk of developing associated co‑morbidities in CF.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026lsquo;I think, a really clear understanding of the benefits like, I know we know the benefits of weight and the general population. But is it the same in CF like, can I say if you lose 10%? This is this is what you\u0026apos;re doing to your long-term risk. So, because if we were really strong in our convictions about them, yeah, I feel it\u0026apos;s a bit difficult\u0026rsquo; (Diet 09)\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eSpecialist CF healthcare services have been faced with a significant change in the health needs of patients since the introduction of HEMT. Patients commenced HEMT, ETI, during the Covid 19 Pandemic at time when they were self-isolating, and CF services were delivered virtually. Although, weight gain was a notable concern since the introduction of CFTR modulator therapies (\u003cspan additionalcitationids=\"CR45 CR46\" citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e)., CF HCPs did not anticipate the speed and scale of the impact. They perceived shielding had been a contributing factor(\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e) particularly as weight gain and reduced physical activity during national Covid 19 lockdowns has been reported in European CF populations and not all were prescribed HEMT (\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e, \u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e). Over the same period unhealthy dietary behaviours and reduced physical activity were reported in non-CF populations although most studies depended on self-report survey evidence and levels of weight gain varied according to sex, age and baseline body mass index (BMI) (\u003cspan additionalcitationids=\"CR52 CR53\" citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e). UK primary care data indicated that most adults remained in the same BMI category after lockdown, but younger adults and approximately 12% of women moved into a higher BMI category. (\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e). American health records showed a similar profile of modest weight increases in women, younger individuals, and those already obese. This suggests that the availability of ETI during the Covid 19 pandemic was related to the increased likelihood that people with CF experienced significantly more weight gain.\u003c/p\u003e \u003cp\u003eThe long-standing relationships between CF HCPs and their patients had a considerable influence on how CF HCPs approached weight management discussions. These relationships, built over years of sustained contact with the multidisciplinary team, gave CF HCPs confidence that they felt knew their patients well and therefore could tailor advice to individual needs whereas there was also a recognition that this familiarity made it more difficult for them to the initiate weight-management conversations over concerns they would disrupt comfortable relationships. Several factors appeared to contribute to this hesitancy. Discomfort initiating a conversation that could be perceived as negative. Dietetic advice to eating less calories was in opposition to historical health messaging about eating high-calorie, palatable foods. Physiotherapists similarly reported hesitancy to link exercise advice to weight management, unless it was directly asked for by the patient, which often softened the way this advice was presented. When patients raised concerns about their weight to clinical nurse specialists, they empathised and offered support but did not envisage they had a role in providing weight management advice, and these contacts were a missed opportunity. Hence the patient-healthcare professional relationship could both facilitate and act as a barrier to weight management conversations (\u003cspan additionalcitationids=\"CR57\" citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eCF HCPs described distinct professional boundaries regarding weight management advice. This professional boundedness could also serve as a barrier for addressing weight management. Dietitians largely felt more confident initiated weight related conversations, as they viewed weight management as part of their professional role. Physiotherapists took the lead in providing exercise advice, with both disciplines working collaboratively at times. This led to the responsibility for weight management largely being deferred to dietitians by the other HCPs who preferred the less risky, possibly confrontational, option of in a support and reinforcement capacity. Evidence suggests successful weight management requires coordinated input from all healthcare professionals not reliance on a single profession, an approach shown to be effective in preventing non‑communicable diseases(\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e, \u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e). Whilst existing collaborative CF MDT working relationships and contributions were perceived as transferable to weight management, dietitians emphasised that agreement was needed on what that collaborative multidisciplinary approach was in order to provide effective weight management. Further this might extend beyond traditional CF team roles. Clinical nurse specialists similarly recognised that, as lifestyle-related comorbidities are expected to become more prevalent as the CF population ages, staffing and skill mix might need to adapt in response to future needs.\u003c/p\u003e \u003cp\u003ePost-modulator overweight and obesity posed several challenges for CF HCPs. Many felt their skills were transferable to weight management whereas some expressed a need for further training to optimise service provision. Despite developing considerable experience of managing overweight problems in CF, dietitians voiced feeling less confident, and required more training, in the management of patients with severe obesity. Concerns over knowledge and skill limitations, and lack of confidence, to broach weight management in consultations with patients is frequently reported by HCPs in primary care (\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e, \u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e). Likewise has been highlighted in an international survey of CF Dietitians, with 86 out of 102 dietitians surveyed indicating they would benefit from more training in weight management(\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e). Dietitians have also expressed concerns that incorporating weight management advice and monitoring would add further to patient treatment burden, a known area of concern voiced by CF patients(\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e). This hesitancy may have been compounded by limited evidence on the impact of overweight and obesity in this population to guide their clinical practice, a concern reported internationally (\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e, \u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e). Participants also suggested some patients lacked motivation to adopt lifestyle changes after starting HEMT. This had the effect of reducing their motivation to persist with weight management advice, particularly when faced with limited response(\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e, \u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e). In contrast, patient-initiated discussions were welcomed, as they indicated clear motivation and readiness to engage in weight management.\u003c/p\u003e \u003cp\u003eA number of organisational challenges linked with the current CF model of care were felt to work against effectively addressing emerging co-morbidities. These included limited time available during busy MDT clinics to deliver behaviour change interventions, competing clinical priorities over weight management, and workforce capacity for home visits. Also, CF MDT clinics are designed to prevent cross infection this creates a logistical challenge as patients need to meet multiple HCPs separately to review their case. This offers reduced opportunities for extended consultation time required for weight management. Likewise reduced frequency of inpatient admissions decreases opportunities for introducing or reinforcing physio supported exercise interventions. As a consequence, outpatient delivery constrained by time, access to equipment and referral to standard pulmonary rehabilitation classes is not appropriate as they are not tailored for the needs of people with CF. Other structural organisation challenges include absence of clear referral pathways to MSK and eating disorder services yet there was a growing recognition that patients with CF increasingly require support from these services. Possibly not a unique challenge as time and resources are commonly reported in the literature as barriers to delivering weight management by HCP in CF and primary care (\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e, \u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e, \u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e) but needs investment or reallocation of resources if to be tackled effectively.\u003c/p\u003e \u003cp\u003eDespite these challenges some CF HCPs in this study had started to revision services in response to changed needs. These included offering group, one-to-one in person or virtual appointments outside of MDT clinics with variable success. The CF HCPs felt a range of options was required to offer choice, but patients had limited time for additional appointments and their attendance at virtual exercise sessions, introduced during the COVID 19 pandemic, had decreased despite offering convenience and being judged more acceptable to patients (\u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e, \u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e) .\u003c/p\u003e \u003cp\u003eThis study captured CF Services undergoing a fundamental transition from predominantly acute care provision dealing with patients experiencing life threatening events to a long term, largely outpatient service managing a chronic condition. This shift requires adjustment not only from people with CF whose health trajectories have significantly changed with HEMT, but also from CF HCPs who are adapting their roles and relationships in response to their patients\u0026rsquo; evolving needs. Similar shifts have been observed in HIV. Advances in antiretroviral therapy have transformed HIV from an acute, inpatient managed illness into a chronic condition of multimorbidity delivered primarily through outpatient and integrated care models(\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e, \u003cspan citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn the UK 64% of adults are living with overweight and obesity, seven million are affected by cardiovascular disease and a third have MSK conditions (\u003cspan additionalcitationids=\"CR73\" citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e). As a results of HEMT, and as people with CF live longer, the prevalence of co-morbidities such as overweight and obesity, cardiovascular and cancer will move towards levels seen in the non CF population (\u003cspan citationid=\"CR75\" class=\"CitationRef\"\u003e75\u003c/span\u003e, \u003cspan citationid=\"CR76\" class=\"CitationRef\"\u003e76\u003c/span\u003e). CF services will increasingly need to focus on preventing, screening and managing these conditions. The most effective model of care for patients, whether through specialist services or through developing referral pathways with primary and non-CF services remains to be determined. The European Cystic Fibrosis Standards of Care (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e)recommend working in partnership with primary care to screen for age-related co-morbidities, emphasising the importance of delivering care in the most appropriate setting for the individuals. This aligns with the recently published NHS policy paper \u0026lsquo;Fit for the Future: 10 Year Health Plan for England which sets out plans to pivot healthcare out of hospital and into primary care settings (\u003cspan citationid=\"CR77\" class=\"CitationRef\"\u003e77\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe use of the socioecological model enabled the individual, interpersonal, organisational, societal, cultural and scientific evidential influences of HEMT on the existing model of CF care to be characterised and their interrelated influences explored.\u003c/p\u003e \u003cp\u003eAs services continue to evolve, there is a clear need for HCP training and development to support the effective delivery of weight management and the promotion of positive healthy lifestyle behaviours. This evolution also requires traditional role boundaries to shift to a more collaborative, multidisciplinary approach to weight management.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eIn the post-modulator era, CF specialist services are clearly in transition and need to continue to adapt to meet new challenges. Evolution toward adopting a chronic-disease model incorporating a healthy lifestyle approach to the prevention of co-morbidities associated with overweight and obesity as the CF population ages. This re-visioning will take time to implement the necessary targeted training, role development, staffing and infrastructure. Further research is required to identify effective behaviour change interventions to establish optimal nutrition and exercise outcomes for people prescribed HEMT.\u003c/p\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and Limitations\u003c/h2\u003e \u003cp\u003eInterviews were conducted virtually which enabled more participants from across the UK to participate. Whilst some suggest virtual interviews produce less data overall, the quality and richness of interviews using both modes were comparable and appeared acceptable to participants (\u003cspan additionalcitationids=\"CR79\" citationid=\"CR78\" class=\"CitationRef\"\u003e78\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR80\" class=\"CitationRef\"\u003e80\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe one-to-one interviews generated more detailed personal accounts, although covered a narrower range of topics. Focus groups encouraged broader discussion through enabling participants to share experiences during group discussions, but some participants possibly those with less clinical experience may have felt hesitant to share their views alongside more experienced professionals(\u003cspan citationid=\"CR81\" class=\"CitationRef\"\u003e81\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThis study only captured the views of doctors, dieticians, physiotherapists, and nurses. A notable absence was psychologists, who play a significant role in the MDT delivering CF services, although every effort was made to recruit them. The importance of psychological input to CF services was raised by participants. Their contribution and insights to the management of overweight and obesity in this population would be valuable in reframing services and future studies.\u003c/p\u003e \u003c/div\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eBMI \u0026ndash; body mass index CF \u0026ndash; cystic fibrosis\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;CFTR \u0026ndash; cystic fibrosis transmembrane regulator\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;CNS- clinical nurse specialist\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;ETI- elexacaftor/tezacaftor/ivacaftor\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;HCP \u0026ndash; health care professional\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;HEMT- highly effective modulator therapy\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;MDT \u0026ndash; multidisciplinary team\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;NHS- National Health Service\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;PERT \u0026ndash; pancreatic enzyme replacement therapy\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e \u003cstrong\u003eand consent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was granted by the University of Birmingham Research Ethics Committee (ERM_1717). The study was carried out in accordance with the Declaration of Helsinki and the principles of Good Clinical Practice. Written informed consent was obtained from all participants.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot Applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data sets and analysis of the current study are available at University of Birmingham UBIRA eData repository. https://doi.org/10.25500/edata.bham.00001503\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis project is funded by the National Institute for Health and Care Research (NIHR) under its HEE/NIHR Doctoral Fellowship scheme [Grant Reference Number NIHR301286 to Joanne Barrett].\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient and public involvement\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePatients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the \u0026apos;Methods\u0026apos; section for further details.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eJB: conceptualisation; methodology; investigation; data curation; writing, original draft; project administration; funding acquisition.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAET: conceptualisation; methodology; writing, review, and editing; supervision; guarantor.\u003c/p\u003e\n\u003cp\u003eSAMF: conceptualisation; methodology; writing, review, and editing; supervision.\u003c/p\u003e\n\u003cp\u003eAT: review and editing; supervision.\u003c/p\u003e\n\u003cp\u003eHW: review and editing; supervision.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors acknowledge the support of the National Institute for Health and Care Research (NIHR) Research Delivery Network for facilitating study set up recruitment and delivery. The authors would also like to thank the NIHR for funding this project, the health care professional participants, The More Life with CF Patient Advisory Group and Lead Partners Mrs Jane Bull and Mrs Carly Beale.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePatient and Public Involvement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe PPI plan for this research has been guided by \u0026nbsp;the NIHR INVOLVE National Standards for Public Involvement and developed in collaboration with people living with CF and CF HCPs(82) . Prior to obtaining research funding, consultation with CF HCPs supported this research as a high priority for their clinical practice. CF HCP informed the study design, participant information, and development of the semi structured interview guide.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Information\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eORCID iDs\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eJ Barrett -\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0002-5601-4028\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eS A Fenton -\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0002-3732-1348\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eA Turner -\u003c/strong\u003e https://orcid.org/0000-0002-5947-3254\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAE Topping\u003c/strong\u003e http://orcid.org/0000-0002-0111-2341\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eH White -\u0026nbsp;\u003c/strong\u003ehttps://orcid.org/0000-0002-9716-3134\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eElborn JS. Cystic fibrosis. The Lancet. 2016;388(10059):2519-31.\u003c/li\u003e\n\u003cli\u003eCystic Fibrosis Trust.Standards for the Clinical Care of Children and Adults with Cystic Fibrosis in the UK. 2024. Third ed. London. UK.\u003c/li\u003e\n\u003cli\u003eBurgel P-R, Southern KW, Addy C, Battezzati A, Berry C, Bouchara J-P, et al. Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues. Journal of Cystic Fibrosis. 2024;23(2):187-202.\u003c/li\u003e\n\u003cli\u003eJohnson C, Butler SM, Konstan MW, Morgan W, Wohl MEB. Factors Influencing Outcomes in Cystic Fibrosis: A Center-Based Analysis. Chest. 2003;123(1):20-7.\u003c/li\u003e\n\u003cli\u003eCystic Fibrosis Trust. Nutritional Management of Cystic Fibrosis. 2016. 2nd Edition ed. London: Cystic Fibrosis Trust.\u003c/li\u003e\n\u003cli\u003eNational Institute forHealth and Care Excellence.Cystic fibrosis: diagnosis and management. NICE guideline [NG78]. [2017].\u003c/li\u003e\n\u003cli\u003eNHS England. National Programmes of Care and Clinical Reference Groups. Specialised Respiratory.[2024] [Available from: https://www.england.nhs.uk/commissioning/spec-services/npc-crg/group-a/specialised-respiratory/.\u003c/li\u003e\n\u003cli\u003eGramegna A, Addy C, Allen L, Bakkeheim E, Brown C, Daniels T, et al. Standards for the care of people with cystic fibrosis (CF). Planning for a longer life. J Cyst Fibros. 2024;23(3):375-87.\u003c/li\u003e\n\u003cli\u003eConway S, Balfour-Lynn IM, De Rijcke K, Drevinek P, Foweraker J, Havermans T, et al. European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre. J Cyst Fibros. 2014;13 Suppl 1:S3-22.\u003c/li\u003e\n\u003cli\u003eCastellani C, Duff AJA, Bell SC, Heijerman HGM, Munck A, Ratjen F, et al. ECFS best practice guidelines: the 2018 revision. J Cyst Fibros. 2018;17(2):153-78.\u003c/li\u003e\n\u003cli\u003eNobili RM, Duff AJA, Ullrich G, Smrekar U, Havermans T, Bryon M, et al. Guiding principles on how to manage relevant psychological aspects within a CF team: Interdisciplinary approaches. Journal of Cystic Fibrosis. 2011;10:S45-S52.\u003c/li\u003e\n\u003cli\u003eBell JM, Dwyer TJ, Cunich M, Dentice RL, Hutchings O, Jo HE, et al. Impact of cystic fibrosis multidisciplinary virtual clinics on patient experience, time commitments and costs. Internal Medicine Journal. 2024;54(5):809-16.\u003c/li\u003e\n\u003cli\u003eOppelaar MC, Emond Y, Bannier MAGE, Reijers MHE, van der Vaart H, van der Meer R, et al. Potential, Pitfalls, and Future Directions for Remote Monitoring of Chronic Respiratory Diseases: Multicenter Mixed Methods Study in Routine Cystic Fibrosis Care. J Med Internet Res. 2024;26:e54942.\u003c/li\u003e\n\u003cli\u003eVagg T, Shanthikumar S, Morrissy D, Chapman WW, Plant BJ, Ranganathan S. Telehealth and virtual health monitoring in cystic fibrosis. Current Opinion in Pulmonary Medicine. 2021;27(6).\u003c/li\u003e\n\u003cli\u003eWong CH, Smith S, Kansra S. Digital technology for early identification of exacerbations in people with cystic fibrosis. Cochrane Database of Systematic Reviews. 2023(4).\u003c/li\u003e\n\u003cli\u003eDaniel HT, Rebecca CR, Peter JB. Progress in precision medicine in cystic fibrosis: a focus on CFTR modulator therapy. Breathe. 2021;17(4):210112.\u003c/li\u003e\n\u003cli\u003eTrust CF. Cystic Fibrosis Trust.UK Cystic Fibrosis Registry Annual Data Report 2024. London ,UK.\u003c/li\u003e\n\u003cli\u003eRamsey BW, Davies J, McElvaney NG, Tullis E, Bell SC, Dřev\u0026iacute;nek P, et al. A CFTR Potentiator in Patients with Cystic Fibrosis and the G551D Mutation. The New England journal of medicine. 2011;365(18):1663-72.\u003c/li\u003e\n\u003cli\u003eBoyle MP, Bell SC, Konstan MW, McColley SA, Rowe SM, Rietschel E, et al. A CFTR corrector (lumacaftor) and a CFTR potentiator (ivacaftor) for treatment of patients with cystic fibrosis who have a phe508del \u0026lt;em\u0026gt;CFTR\u0026lt;/em\u0026gt; mutation: a phase 2 randomised controlled trial. The Lancet Respiratory Medicine. 2014;2(7):527-38.\u003c/li\u003e\n\u003cli\u003eElborn SJ, Ramsey BE, Boyle ME, Konstan MW, Huang X, Marigowda G, et al. Efficacy and safety of lumacaftor/ivacaftor combination therapy in patients with cystic fibrosis homozygous for Phe508del CFTR by pulmonary function subgroup: a pooled analysis. The Lancet Respiratory Medicine. 2016;4:617-26.\u003c/li\u003e\n\u003cli\u003eHeijerman HGM, McKone EF, Downey DG, Van Braeckel E, Rowe SM, Tullis E, et al. Efficacy and safety of the elexacaftor plus tezacaftor plus ivacaftor combination regimen in people with cystic fibrosis homozygous for the F508del mutation: a double-blind, randomised, phase 3 trial. The Lancet (British edition). 2019;394(10212):1940-8.\u003c/li\u003e\n\u003cli\u003eNHS England. Comissioning Statement. Ivacaftor, tezacaftor/ivacaftor, and elexacaftor/tezacaftor/ivacaftor for licensed and off-label use in patients with cysticfibrosis who have named mutations.[2024].\u003c/li\u003e\n\u003cli\u003eKeating C, Yonker LM, Vermeulen F, Prais D, Linnemann RW, Trimble A, et al. Vanzacaftor-tezacaftor-deutivacaftor versus elexacaftor-tezacaftor-ivacaftor in individuals with cystic fibrosis aged 12 years and older (SKYLINE Trials VX20-121-102 and VX20-121-103): results from two randomised, active-controlled, phase 3 trials. Lancet Respir Med. 2025;13(3):256-71.\u003c/li\u003e\n\u003cli\u003eKeogh RH, Tanner K, Simmonds NJ, Bilton D. The changing demography of the cystic fibrosis population: forecasting future numbers of adults in the UK. Scientific reports. 2020;10(1):10660.\u003c/li\u003e\n\u003cli\u003eLopez A, Daly C, Vega-Hernandez G, MacGregor G, Rubin JL. Elexacaftor/tezacaftor/ivacaftor projected survival and long-term health outcomes in people with cystic fibrosis homozygous for F508del. J Cyst Fibros. 2023.\u003c/li\u003e\n\u003cli\u003ePage A, Goldenberg A, Matthews AL. Lived experiences of individuals with cystic fibrosis on CFTR-modulators. BMC Pulm Med. 2022;22(1):42.\u003c/li\u003e\n\u003cli\u003eAspinall SA, Mackintosh KA, Hill DM, Cope B, McNarry MA. Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis. International Journal of Environmental Research and Public Health. 2022;19(10):6114.\u003c/li\u003e\n\u003cli\u003eDavies SH, Wade F, Fogg H, Walsh A, Southern KW. Qualitative study exploring the views and perceptions of parents/carers of young children with CF regarding the introduction of CFTR modulator therapy (The REVEAL study; PaRents pErspectiVEs of KAftrio in chiLdren aged 2-5). BMJ Open Respir Res. 2025;12(1).\u003c/li\u003e\n\u003cli\u003eBrinkmann S. Doing interviews Second edition. ed. Kvale S, editor: Los Angeles, California : SAGE Publications, 2018; 2018.\u003c/li\u003e\n\u003cli\u003eZoom Communications Inc. Zoom. USA.\u003c/li\u003e\n\u003cli\u003eRubin HJ, Rubin IS. Qualitative interviewing: the art of hearing data. 2006. p. 173-200.\u003c/li\u003e\n\u003cli\u003eInternational QSR. NVivo version 14. Australia2023.\u003c/li\u003e\n\u003cli\u003eGale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC medical research methodology. 2013;13(1):117.\u003c/li\u003e\n\u003cli\u003eBradbury-Jones C. Enhancing rigour in qualitative health research: exploring subjectivity through Peshkin\u0026apos;s I\u0026apos;s. J Adv Nurs. 2007;59(3):290-8.\u003c/li\u003e\n\u003cli\u003eBronfenbrenner U. International Encyclopedia of Education. Ecological models of human development. . 2nd ed. Oxford: Elsevier; 1994.\u003c/li\u003e\n\u003cli\u003eMaxwell JA, Mittapalli K. SAGE Handbook of Mixed Methods in Social \u0026amp; Behavioral Research. 2010 2023/08/07. Thousand Oaks Thousand Oaks, California: SAGE Publications, Inc. 2. Available from: https://methods.sagepub.com/book/sage-handbook-of-mixed-methods-social-behavioral-research-2e.\u003c/li\u003e\n\u003cli\u003eFletcher AJ. Applying critical realism in qualitative research: methodology meets method. International Journal of Social Research Methodology. 2017;20(2):181-94.\u003c/li\u003e\n\u003cli\u003eCreswell JW, Miller DL. Determining Validity in Qualitative Inquiry. Theory into practice. 2000;39(3):124-30.\u003c/li\u003e\n\u003cli\u003ePublic Health England. Guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19. 2020.\u003c/li\u003e\n\u003cli\u003eNazareth D, Sumner C, Daniels J, Mathews J, Hyde G, Walshaw M. Managing an adult CF population in the COVID-19 pandemic\u0026mdash;1 year on. QJM: An International Journal of Medicine. 2021;115(8):521-4.\u003c/li\u003e\n\u003cli\u003eClarke E, Taylor J, Watson P, Freeston J, Jones A, Peckham D, et al. Prevalence and Distribution of Musculoskeletal Symptoms in Cystic Fibrosis and Impacts on Daily Life. Pediatric Pulmonology. 2025;60(1):e27418.\u003c/li\u003e\n\u003cli\u003eQuick VM, Byrd-Bredbenner C, Neumark-Sztainer D. Chronic Illness and Disordered Eating: A Discussion of the Literature. Advances in Nutrition. 2013;4(3):277-86.\u003c/li\u003e\n\u003cli\u003ePetropoulou A, Bakounaki G, Grammatikopoulou MG, Bogdanos DP, Goulis DG, Vassilakou T. Eating Disorders and Disordered Eating Behaviors in Cystic Fibrosis: A Neglected Issue. Children [Internet]. 2022; 9(6).\u003c/li\u003e\n\u003cli\u003ePetersen M.C. BL, Wallendorf M.,Litvin M. Effect of elexacaftor-tezacaftor-ivacaftor on body weight and metabolic parameters in adults with cystic fibrosis. Journal of Cystic Fibrosis. 2022;21:265-71.\u003c/li\u003e\n\u003cli\u003eHarindhanavudhi T, Wang Q, Dunitz J, Moran A, Moheet A. Prevalence and factors associated with overweight and obesity in adults with cystic fibrosis: A single-center analysis. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 2019.\u003c/li\u003e\n\u003cli\u003eSalvatore D, Padoan R, Amato A, Salvatore M, Campagna G, On Behalf Of The Italian Cf Registry Working G. Nutritional Trends in Cystic Fibrosis: Insights from the Italian Cystic Fibrosis Patient Registry. J Clin Med. 2024;13(13).\u003c/li\u003e\n\u003cli\u003eSzentpetery S, Fernandez GS, Schechter MS, Jain R, Flume PA, Fink AK. Obesity in Cystic fibrosis: prevalence, trends and associated factors data from the US cystic fibrosis foundation patient registry. J Cyst Fibros. 2022;21(5):777-83.\u003c/li\u003e\n\u003cli\u003eBailey J, Rozga M, McDonald CM, Bowser EK, Farnham K, Mangus M, et al. Effect of CFTR Modulators on Anthropometric Parameters in Individuals with Cystic Fibrosis: An Evidence Analysis Center Systematic Review. Journal of the Academy of Nutrition and Dietetics. 2020.\u003c/li\u003e\n\u003cli\u003eBoni A, Murciano M, De Luca F, Rizzo V, Cappelli C, D\u0026apos;Al\u0026ugrave; V, et al. COVID-19 Lockdown Impacts Among Patients with Cystic Fibrosis: An Italian Regional Reference Centre Experience. Front Biosci (Landmark Ed). 2022;27(6):178.\u003c/li\u003e\n\u003cli\u003eRadtke T, Haile SR, Dressel H, Benden C. Recommended shielding against COVID-19 impacts physical activity levels in adults with cystic fibrosis. Journal of Cystic Fibrosis. 2020;19(6):875-9.\u003c/li\u003e\n\u003cli\u003eDicken S.J. MJJ, Newberry Le Vay J, Beard E, Kale D, Herbec A, Shahab L. . Impact of COVID-19 Pandemic on Weight and BMI among UK Adults: A Longitudinal Analysis of Data from the HEBECO Study. Nutrients. 2021;24(9).\u003c/li\u003e\n\u003cli\u003eMcCarthy H, Potts HWW, Fisher A. Physical Activity Behavior Before, During, and After COVID-19 Restrictions: Longitudinal Smartphone-Tracking Study of Adults in the United Kingdom. J Med Internet Res. 2021;23(2):e23701.\u003c/li\u003e\n\u003cli\u003eStephanie S, Mike T, Mark T, Jae S, Yvonne B, Laurie B, et al. Changes in physical activity and sedentary behaviours from before to during the COVID-19 pandemic lockdown: a systematic review. BMJ Open Sport \u0026amp; Exercise Medicine. 2021;7(1):e000960.\u003c/li\u003e\n\u003cli\u003eGonz\u0026aacute;lez-Monroy C, G\u0026oacute;mez-G\u0026oacute;mez I, Olarte-S\u0026aacute;nchez CM, Motrico E. Eating Behaviour Changes during the COVID-19 Pandemic: A Systematic Review of Longitudinal Studies. International Journal of Environmental Research and Public Health [Internet]. 2021; 18(21).\u003c/li\u003e\n\u003cli\u003eZaccardi F, Byrne K, Khunti K, Kloecker D, Reynoso R, Shabnam S, et al. The impact of COVID-19 lockdowns on the body mass index of people living with obesity: A UK retrospective cohort study using the UK Clinical Practice Research Datalink. Obesity Research \u0026amp; Clinical Practice. 2023;17(6):468-76.\u003c/li\u003e\n\u003cli\u003eSnowball JE, Flight WG, Heath L, Koutoukidis DA. A paradigm shift in cystic fibrosis nutritional care: Clinicians\u0026apos; views on the management of patients with overweight and obesity. J Cyst Fibros. 2023;22(5):836-42.\u003c/li\u003e\n\u003cli\u003eChisholm A, Hart J, Lam V, Peters S. Current challenges of behavior change talk for medical professionals and trainees. Patient Educ Couns. 2012;87(3):389-94.\u003c/li\u003e\n\u003cli\u003eBlackburn M, Stathi A, Keogh E, Eccleston C. Raising the topic of weight in general practice: perspectives of GPs and primary care nurses. BMJ Open. 2015;5(8):e008546.\u003c/li\u003e\n\u003cli\u003eMitchell P WM, Golden R, McNellis B, Okun S, Webb C. E. , Rohrbach V, Von Kohorn I, editor Core Principles \u0026amp; Values of Effective Team-Based Health Care. Discussion Paper. Institue of Medicine of the National Academies; 2012; Washington, DC.\u003c/li\u003e\n\u003cli\u003eJennings C, Astin F. A multidisciplinary approach to prevention. European Journal of Preventive Cardiology. 2017;24(3_suppl):77-87.\u003c/li\u003e\n\u003cli\u003eBornhoeft K. Perceptions, Attitudes, and Behaviors of Primary Care Providers Toward Obesity Management: A Qualitative Study. J Community Health Nurs. 2018;35(3):85-101.\u003c/li\u003e\n\u003cli\u003eSnowball J, Collins S, Smith C, Lynch V, Barrett J, Hickson M. P330 Navigating the unknown an international survey of current dietetic practices for overweight and obesity in people with cystic fibrosis. Journal of Cystic Fibrosis. 2024;23:S169-S70.\u003c/li\u003e\n\u003cli\u003eRowbotham NJ, Smith S, Leighton PA, Rayner OC, Gathercole K, Elliott ZC, et al. The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers. Thorax. 2018;73(4):388-90.\u003c/li\u003e\n\u003cli\u003eLeonard A, Bailey J, Bruce A, Jia S, Stein A, Fulton J, et al. Nutritional considerations for a new era: A CF foundation position paper. Journal of Cystic Fibrosis. 2023.\u003c/li\u003e\n\u003cli\u003eBr\u0026auml;utigam Ewe M, Hildingh C, M\u0026aring;nsson J, Lydell M. Primary care nurses\u0026rsquo; perceptions and experiences of patients being overweight or obese as well as visions and attitudes about working with lifestyle issues: a qualitative interview study. BMC nursing. 2021;20(1):1-170.\u003c/li\u003e\n\u003cli\u003eWarr W, Aveyard P, Albury C, Nicholson B, Tudor K, Hobbs R, et al. A systematic review and thematic synthesis of qualitative studies exploring GPs\u0026apos; and nurses\u0026apos; perspectives on discussing weight with patients with overweight and obesity in primary care. Obesity Reviews. 2021;22(4):e13151.\u003c/li\u003e\n\u003cli\u003eJeffers L, Manner J, Jepson R, McAteer J. Healthcare professionals\u0026rsquo; perceptions and experiences of obesity and overweight and its management in primary care settings: a qualitative systematic review. Primary Health Care Research \u0026amp; Development. 2024;25:e5.\u003c/li\u003e\n\u003cli\u003eTomlinson OW, Saynor ZL, Stevens D, Urquhart DS, Williams CA. The impact of COVID-19 upon the delivery of exercise services within cystic fibrosis clinics in the United Kingdom. The Clinical Respiratory Journal. 2022;16(4):335-40.\u003c/li\u003e\n\u003cli\u003eMorrison L, McCrea G, Palmer S. Online activity \u0026ndash; A beaming good initiative! Delivering alternative exercise opportunities for people with cystic fibrosis. Physiotherapy Theory and Practice. 2024;40(7):1609-15.\u003c/li\u003e\n\u003cli\u003eWorld Health O. WHO guideline on HIV service delivery Geneva: WHO; 2025.\u003c/li\u003e\n\u003cli\u003eJones HT, Lynch L, Barber TJ, Rattue M, Waters LJ, Asboe D, et al. What services, interventions and support are available for People with HIV in England to manage their overall health and wellbeing? A scoping review. HIV Med. 2025;26(7):1004-33.\u003c/li\u003e\n\u003cli\u003eOffice for Health Improvement and Disparities . Obesity Profile: short statistical commentary [May 2024] [Available from: https://www.gov.uk/government/statistics/update-to-the-obesity-profile-on-fingertips/obesity-profile-short-statistical-commentary-may-2024.\u003c/li\u003e\n\u003cli\u003eNHS England. Elective Care Transformation Solutions. Best Practice Solutions.Musculoskeletal Health [2024] [Available from: https://www.england.nhs.uk/elective-care-transformation/best-practice-solutions/musculoskeletal/#:~:text=Over%2020%20million%20people%20in,quality%20of%20life%20and%20independence.\u003c/li\u003e\n\u003cli\u003eNHS England. Our work. Living well, ageing well and tackling premature mortality. Cardiovascular Disease (CVD).[2024] [Available from: https://www.england.nhs.uk/ourwork/clinical-policy/cvd/#:~:text=CVD%20affects%20around%20seven%20million,as%20the%20\u0026apos;high%20risk%20conditions\u0026apos;.\u003c/li\u003e\n\u003cli\u003eFardouly J, Vartanian LR. Social Media and Body Image Concerns: Current Research and Future Directions. Current Opinion in Psychology. 2016;9:1-5.\u003c/li\u003e\n\u003cli\u003eWorld Health O. Obesity and overweight. . 2018.\u003c/li\u003e\n\u003cli\u003eDepartment of HaSC. Fit for the Future:10 Year Health Plan for England. In: Service NH, editor. 2025.\u003c/li\u003e\n\u003cli\u003eKite J, Phongsavan P. Insights for conducting real-time focus groups online using a web conferencing service [version 2; peer review: 2 approved]. 2017;6(122).\u003c/li\u003e\n\u003cli\u003eAbrams KM, Wang Z, Song YJ, Galindo-Gonzalez S. Data Richness Trade-Offs Between Face-to-Face, Online Audiovisual, and Online Text-Only Focus Groups. Social Science Computer Review. 2014;33(1):80-96.\u003c/li\u003e\n\u003cli\u003eArchibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using Zoom Videoconferencing for Qualitative Data Collection: Perceptions and Experiences of Researchers and Participants. International Journal of Qualitative Methods. 2019;18:1609406919874596.\u003c/li\u003e\n\u003cli\u003eFreeman T. \u0026apos;Best practice\u0026apos; in focus group research: making sense of different views. J Adv Nurs. 2006;56(5):491-7.\u003c/li\u003e\n\u003cli\u003eEngagement NCf, Dissemination. UK Standards for Public Involvement. 2019. Contract No.: Report.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"cystic fibrosis, specialised services, CFTR modulator therapy, semi-structured interviews, socio-ecological model, multidisciplinary care","lastPublishedDoi":"10.21203/rs.3.rs-9020027/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9020027/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eCystic Fibrosis (CF) is a life limiting inherited disease that primarily effects the respiratory and gastrointestinal systems. Patients with CF have complex healthcare needs requiring multidisciplinary specialist centre care, as this is associated with improved health outcomes. Recent introduction of highly effective modulator therapies has significantly improved the health and life expectancy of this population. This study aimed to explore CF healthcare professionals experience of the impact of highly effective modulator therapies on specialist services.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eQualitative semi-structured online focus groups (n\u0026thinsp;=\u0026thinsp;5) and individual (n\u0026thinsp;=\u0026thinsp;8) interviews were conducted with 10 dietitians, 6 physiotherapists,4 clinical nurse specialists and 3 doctors working in adult CF centres. Interview data were analysed using the framework method. Themes and subthemes were mapped to Bronfenbrenner\u0026rsquo;s socio-ecological model to characterise the individual and interpersonal (micro), organisational (meso) and policy levels (macro) and chrono (time) influence of highly effective modulator therapies on the CF healthcare service model.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eFive main themes were identified; \u003cem\u003eexisting challenges\u003c/em\u003e (timeline -chrono), \u003cem\u003egeneralist vs specialist\u003c/em\u003e (individual - micro), \u003cem\u003erelationships and roles\u003c/em\u003e (interpersonal - micro\u003cem\u003e)\u003c/em\u003e, \u003cem\u003emodel of care\u003c/em\u003e (\u003cb\u003eorganisational\u003c/b\u003e \u0026ndash; meso), \u003cem\u003enormalising amid uncertainty\u003c/em\u003e (CF culture and society - macro).\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eSince the introduction of highly effective modulator therapies, specialised CF multidisciplinary teams have experienced a change in the healthcare needs and life expectancy of their patients due to fewer respiratory exacerbations, improved lung function, and weight gain. Services are now transitioning from acute care to the management of a chronic condition. As people with CF live longer and experience co-morbidities increasingly similar to the general population, services will need to incorporate approaches that prevent and manage co-morbidities associated with overweight, obesity and ageing. Targeted training, role development, and a change to infrastructure will be required to ensure CF services remain responsive to the evolving health needs of their patients. Partnership with primary care and clearer referral pathways to other specialist services will be essential to delivering effective care in the most appropriate settings. Research to develop effective behaviour change interventions and optimal nutritional targets for patients prescribed highly effective modulator therapies is required to direct clinical practice.\u003c/p\u003e","manuscriptTitle":"Navigating Change – UK specialised adult cystic fibrosis service delivery in the highly effective modulator therapy era","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-04-14 15:07:06","doi":"10.21203/rs.3.rs-9020027/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-04-26T10:18:52+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-21T12:37:16+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2026-04-17T06:15:07+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"320891668339572806825993191089180640283","date":"2026-04-15T07:38:55+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"220437888335919084128909094567253475820","date":"2026-04-14T13:16:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"72570109811122990252255092266501990187","date":"2026-04-09T23:15:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"208763240444274905855627014472752777222","date":"2026-04-09T21:48:27+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-04-07T14:29:09+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-04-06T08:51:21+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2026-03-13T11:44:51+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-03-11T19:36:06+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2026-03-11T12:46:08+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"39da80d8-0344-4dec-876a-d41de3b080bd","owner":[],"postedDate":"April 14th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-14T15:07:06+00:00","versionOfRecord":[],"versionCreatedAt":"2026-04-14 15:07:06","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9020027","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9020027","identity":"rs-9020027","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}