Qualitative experiences and depression/ anxiety scores in parents of children with Cystic Fibrosis Transmembrane Related Metabolic Syndrome

Qualitative experiences and depression/ anxiety scores in parents of children with Cystic Fibrosis Transmembrane Related Metabolic Syndrome | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL Pediatric Pulmonology This is a preprint and has not been peer reviewed. Data may be preliminary. 18 February 2025 V1 Latest version Share on Qualitative experiences and depression/ anxiety scores in parents of children with Cystic Fibrosis Transmembrane Related Metabolic Syndrome Authors : Lynne Carty , Dobra R 0000-0001-7052-4174 [email protected] , Jackie Francis , Michele Puckey , Andrew Bush 0000-0001-6756-9822 , and Jane Davies 0000-0003-3506-1199 Authors Info & Affiliations https://doi.org/10.22541/au.173989275.58392902/v1 320 views 195 downloads Contents Abstract Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract Cystic Fibrosis Transmembrane Related Metabolic Syndrome/Cystic Fibrosis Screen Positive, Inconclusive Diagnosis describes children with a positive newborn screen for whom follow-up tests do not confirm CF. Many are healthy carriers, but some will convert to a CF diagnosis; the natural history is not yet well understood. In children with chronic illnesses, unpredictable disease process and limited knowledge of long-term consequences present significant challenges to parental mental health. We wanted to understand the emotional wellbeing of parents with children with CRMS/CFSPID to guide the mental health support offered within the service. Parents were invited to complete validated depression and anxiety screening questionnaires and a short interview. Interview responses were transcribed and analysed using thematic analysis. Thirteen parents from 10 families completed questionnaires and/or the interview. Two of the parents had raised scores on the questionnaires. Our interviews revealed five themes explored here: difficulty adjusting to the label; concern about the future and its uncertainty; fluctuating states of anxiety (subthemes linked to respiratory tract infections and to medical appointments); difficulty explaining the label (subthemes to healthcare professionals and non-healthcare professionals); and satisfaction with the CRMS/CFSPID service. Our data reveal relatively benign scores using objective screening tools, but the qualitative data paints a picture of significant impact on wellbeing. We recommend screening parents from the time their child receives the label, and later the children themselves, for depression and anxiety and signposting to existing resources. Ultimately, a better understanding of the CRMS/CFSPID trajectory may enable us to give families the answers they need. Qualitative experiences and depression/ anxiety scores in parents of children with Cystic Fibrosis Transmembrane Related Metabolic Syndrome Carty, L* 1 ; Dobra, R* 1,2 ; Francis, J 2 ; Puckey, M 2 ; Bush, A 1,2 ; Davies JC 1,2 *Denotes joint first author 1 National Heart and Lung Institute, Imperial College London 2 Department of Paediatrics, Royal Brompton Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust Corresponding author [email protected] Abstract Cystic Fibrosis Transmembrane Related Metabolic Syndrome/Cystic Fibrosis Screen Positive, Inconclusive Diagnosis describes children with a positive newborn screen for whom follow-up tests do not confirm CF. Many are healthy carriers, but some will convert to a CF diagnosis; the natural history is not yet well understood. In children with chronic illnesses, unpredictable disease process and limited knowledge of long-term consequences present significant challenges to parental mental health. We wanted to understand the emotional wellbeing of parents with children with CRMS/CFSPID to guide the mental health support offered within the service. Parents were invited to complete validated depression and anxiety screening questionnaires and a short interview. Interview responses were transcribed and analysed using thematic analysis. Thirteen parents from 10 families completed questionnaires and/or the interview. Two of the parents had raised scores on the questionnaires. Our interviews revealed five themes explored here: difficulty adjusting to the label; concern about the future and its uncertainty; fluctuating states of anxiety (subthemes linked to respiratory tract infections and to medical appointments); difficulty explaining the label (subthemes to healthcare professionals and non-healthcare professionals); and satisfaction with the CRMS/CFSPID service. Our data reveal relatively benign scores using objective screening tools, but the qualitative data paints a picture of significant impact on wellbeing. We recommend screening parents from the time their child receives the label, and later the children themselves, for depression and anxiety and signposting to existing resources. Ultimately, a better understanding of the CRMS/CFSPID trajectory may enable us to give families the answers they need. Introduction Newborn screening (NBS) for Cystic Fibrosis (CF) has improved outcomes but introduces new diagnostic conundrums 1,2 . The designation cystic fibrosis transmembrane (CFTR) -related metabolic syndrome (CRMS), known in the UK and Europe as CF Screen Positive, Inconclusive Diagnosis (CFSPID) is used for infants with a positive NBS for whom follow-up tests do not confirm a CF diagnosis. In 2014 a global harmonised definition was reached 3 : An asymptomatic child with a positive CF newborn screen AND A sweat chloride <30mmol/L and two Cystic Fibrosis Transmembrane Receptor ( CFTR ) variants, at least one with unclear phenotypic consequences OR an intermediate sweat chloride (30-59mmol/L) and one or zero CF causing variants Often following a positive NBS, older or subsequent siblings who do not have positive screening tests are tested- either on parental request, or suspicion of symptoms- and found to have the same CFTR genetics as the infant labelled CRMS/CFSPID. These siblings may be followed up in the CRMS/CFSPID service for consistency. A few children, born before the definition CRMS/CFSPID was agreed in 2014, were initially labelled as having CF and have subsequently, in some centres, been relabelled as CRMS/CFSPID 4 . CRMS/CFSPID is not a diagnosis but a designation or “holding label”. Most people with CRMS/CFSPID remain healthy, however, a minority will convert to a CF diagnosis or develop CFTR-related disorders (CFTR-RD) later in life (e.g. bronchiectasis) 5 . The uncertainty inherent in the label makes it challenging to know how best to ‘medically oversee’ these children. The risk of over-medicalising a healthy child must be balanced against that of missing a child with CF/CFTR-RD 3 . Diagnostic uncertainty adds significant mental health burden to parents 6–10 . The CRMS/CFSPID label usually comes at an already challenging time, caring for a young infant 9,11 . We wanted to better understand the emotional well-being and experience of parents with children labelled as CRMS/CFSPID in order to improve the support we provide within our service. Aims To assess the prevalence of depression and anxiety symptoms in the parents of a single-centre CRMS/CFSPID cohort and to elicit parents’ qualitative experiences of their CRMS/CFSPID journey to better understand how we can support the parents at our centre Methods Parents were asked to complete the validated and widely used patient health questionnaire (PHQ-8) and generalised anxiety disorder assessment (GAD-7) screening tools, which are part of our standard of care for people with CF at our centre. Parents were also asked “Is there anything from the past regarding your CFSPID journey that you would like to share?”. The responses to this question were collected in writing, via telephone or face-to-face semi-structured interviews. The verbal responses were transcribed and coded in Excel. The coded data were analysed using thematic analysis employing a structure as described by Braun and Clark 12 . Analysis was conducted by two separate analysers with experience of thematic analysis (LC, RD). If parents reported high scores in the screening questionnaires, or raised concerns in their free responses, appropriate referral pathways for support were followed. Every parent of a child with CRMS/CFSPID at our centre was eligible and invited to participate. This project was conducted to understand the needs of parents within our service and to determine the mental health screening and support we offer. As such, it was conceptualised as a patient engagement exercise and as such was exempt from gaining formal ethical approval, however the purpose of the project was explained to all parents and they gave verbal consent to participate. Results Our centre cares for 14 children identified through NBS and three siblings with the same genetics as their CRMS/CFSPID siblings, who are followed up in clinic for familial consistency. Therefore, there were 14 eligible pairs of parents. In November and December 2023, 13 parents from 10 families, nine mothers and four fathers, responded to the questionnaires, the open question, or both. Participant identifiers, brief demographics and questionnaire scores are shown in Table 1. PID1 Mother 2019 (NBS) & 2019 (sibling, born 2019) 8 7 Yes PID2 Father 4 2 Yes PID3 Mother 2015 (NBS) DNC DNC Yes PID4 Mother 2019 (NBS) 1 3 Yes PID5 Mother 2017 (NBS) 0 0 No PID6 Mother 2018 (NBS) & 2018 (sibling, born 2014) 1 0 Yes PID7 Father 0 0 Yes PID8 Mother 2014 (NBS) DNC DNC Yes PID9 Father 0 0 Yes PID10 Mother 2015 (NBS) & 2018 (sibling, born 2018) 4 5 Yes PID11 Father 3 2 Yes PID12 Mother 2016 (NBS) DNC DNC Yes PID13 Mother 2021 (NBS) 0 1 Yes Table 1: PHQ-8 and GAD-7 scores PHQ-8 severity scores: 0-4, none; 5-9, mild; 10-14, moderate; 15-19 moderately severe; 20-27 severe. GAD-7 severity scores: 0-5, none; 6-10, mild; 11-15, moderate; 16-21, severe DNC Did not complete One mother, who had two children, the first identified as having CFMS/CFSPID in 2015 on NBS and the second on parent requested genetic testing on a baby born in 2018 had raised scores on the GAD-7. One mother with twins identified as having CRMS/CFSPID in 2019 reported raised scores on both tools. Theme Subtheme Example Quotes Difficulty adjusting to the label PID2: It has impacted everything. Our marriage. PID3: We couldn’t enjoy them as newborns PID 7: We sort of shut down. Didn’t want to see anyone, didn’t know what to tell anyone. PID11: I have definite psychological damage from first 8 weeks. PID11: My parents-in-law had to move in. Concern about the future and its uncertainty PID3: The limbo is exhausting PID8: I think for CFSPID parents it is the unknown that is the biggest ongoing concern and worry PID10: We weren’t sure if this would be life threatening or mild or nothing PID11: There is fear and living on a “knife-edge”. Its ok, but it might not be ok, and can change in heartbeat PID13: SPID is neither one thing or another, so it’s tricky Fluctuating states of anxiety Linked to medical appts. and investigations PID9: I didn’t want to go to [the specialist hospital] because of what it represented PID11: Days at [the specialist hospital] take it out of me, I would need the day off the next day as I was so drained PID12: Sweat tests are always so stressful. What if this is the day? Linked to respiratory tract infections PID1: We never know what to do if they get coughs, and we often panic PID3: We experience extreme fear and anxiety with a cough as we don’t know what the implications are PID11: There’s always what if “they start to get chest infections?” Difficulty explaining the label To non-healthcare professionals PID3: I have no resources to give, I have to educate people I encounter from what I have learned PID7: We would appreciate further support in explaining the diagnosis and reason for appointments to [our children] PID11: We would like guidance on how to discuss this with the children To healthcare professionals (HCPS) PID1: With any health professionals apart from those at [the specialist hospital], we always have to explain PID11: We often have difficulty with other health professionals who are not trained to deal with CFSPID. PID12: Doctors and nurses are under the impression that he has CF and do not understand CFSPID, so he is treated as CF. Satisfaction with the CFSPID service PID6: [CNS and consultant] have been a great support throughout our journey PID8: We know who to speak to if we need to PID10: [Consultant and CNS] have put their arms around us many times literally and figuratively PID11: On the day we went to [the hospital], [CNS] greeted us out of the lift and made it all ok Table 2, Thematic analysis of the free response question We identified five themes and four subthemes, summarised in Table 2 and explored in the discussion. Discussion Our data reveal relatively benign scores in the objective screening tools, but the qualitative data paints a picture of more significant and complex impact on quality of life. Although the raised scores were borderline, typically suggesting rescreen should be offered in a few months, the parents with raised scores were offered referral for psychological support. One was already receiving external support so declined, and one accepted the referral. Four parents were already receiving external psychological support, perhaps reflecting previous concerns with their emotional wellbeing. Additionally, four parents told us that their scores would have been higher in the first six to twelve months following NBS, which is consistent with previous qualitative work in this area 9 . Exploring the five qualitative themes Difficulty adjusting to the label Parents may experience loss, guilt, shock and anxiety when their infant has a positive newborn screening test or is diagnosed with a chronic illness 13–15 , and these emotions are not linearly related to the severity of the illness 14,16 . Parents, especially mothers, may experience high levels of emotional distress, sleep disturbance, depression and anxiety 11 . This impacts on relationships, emotional wellbeing and quality of life 13,14,16,17 . Although CFPSPID is not an illness, and it is important we are clear in that message, parents experience similar stressors, and indeed the uncertainty and lack of control present additional challenges 9,10 . A period of adjustment is needed, and parents need time to grieve what they have lost; their expectation of a healthy child. Following receiving the CRMS/CFSPID label, parents described the news as having an impact on their ability to enjoy their newborn baby, their marriages, their work, and their ability to connect with their social network. PID3: “We couldn’t enjoy them as newborns” PID 7: “We sort of shut down. Didn’t want to see anyone, didn’t know what to tell anyone” Many report still struggling to come to terms with the label and its possible implications. A period of adjustment is to be expected, but it is important to identify where these feelings have become more pervasive or developed into adjustment disorder; an excessive reaction to stress that involve negative thoughts, strong emotions and changes in behaviour. Incorporating mental health screening into the clinical assessment of parents may be a pragmatic way to identify those families who are experiencing significant impact on their emotional wellbeing and to identify those at risk of adjustment disorder. Reflecting on comments from parents, this would be optimally initiated when parents come under the care of the CRMS/CFSPID service so they can identify those families who are struggling, and support parents through their potential grief and subsequent adjustment. Concern about the future and its uncertainty The CRMS/CFSPID designation is relatively new, therefore little is known about the long-term natural history of the cohort. We know that a small percentage of individuals will develop CF/CFTR-RD, but we currently do not know what this percentage is, and have no way to prospectively identify who is at risk 18 . The estimated risk of conversion seems to show wide variation in different cohorts even when based in a single country 4,5,18 . As such, the uncertainty experienced by parents is grounded in the reality of the situation. PID8 : “I think for CFSPID parents it is the unknown that is the biggest ongoing concern and worry” Parents reported relief that their child does not have CF, pressure to feel “grateful”, and conflicted emotions about ongoing uncertainty. PID1: “Getting the SPID diagnosis after expecting CF is like winning the lottery. But then you realise it’s still serious” PID7 : “There’s difficulty admitting the strain of the CFSPID label as we’re aware it’s not so bad, so we shouldn’t feel this way” PID11: “There is fear and living on a “knife edge” ’. Its ok, but it might not be ok, and can change” Unpredictable disease process, limited knowledge of long-term consequences, and prognostic uncertainty have been reported to increase perceived disease severity, lack of control, frustration and reduce optimism in other paediatric conditions 6–8,10,19 . Given our limited understanding of this cohort’s future, providing education whilst being honest about our knowledge gaps may help to support families whilst providing a safe space to explore these existential issues. Acknowledging the potential impact on emotional wellbeing may also encourage people to share these more complex and challenging emotions. Fluctuating states of anxiety Our data shows that, due to the uncertainty, families move in and out of states of fear and distress, which is, in itself, distressing. Particular times of distress and anxiety often related to medical tests and contacts with healthcare professionals (HCPs) which act as concrete reminders their child risked developing serious illness. PID1: “There’s stress every time you have a sweat test or review. This one might show they have CF.” This anxiety around investigations and appointments highlights the need to ensure that the guidelines for medical management are proportionate, recognising the profound impact that overmedicalisation may have on parental, and later children’s, mental health and wellbeing. Other times of anxiety and distress related to concern around the significance of coughs and respiratory tract infections. Healthy children can encounter multiple respiratory tract infections in the first years of life, especially if they, or siblings attend nursery or school 20,21 . However, for families living with CRMS/CFSPID, these infections can cause heightened anxiety both in terms of how they should be managed acutely, but also whether a simple infection signals the emergence of a more worrying diagnosis. . Difficulty explaining the label This was further divided into explaining CRMS/CFSPID to non-HCPs for example school staff, family members, support networks and the child themself and to HCPs without specialist CRMS/CFSPID knowledge. PID3: “I have no resources to give, I have to educate people I encounter from what I have learned” CRMS/CFSPID is a complex label. It does not fit society or HCP’s common models of health and illness. This, combined with its rarity, means that it is often misunderstood and hard for parents to explain to those outside of specialist centre’s teams. Suggestions from our cohort included awareness campaigns, especially for HCPs, and resources to use for schools, HCPs and with the child themselves to support discussions around the designation. Satisfaction with the CRMS/CFSPID service The interviewer was not known to the parents and had not been part of the CRMS/CFSPID service previously. Although clearly some public account bias must be considered, parents universally reported satisfaction with the care they receive through the service. Many highlighted that this positive experience started before they had the results of the sweat test and the knowledge that their child fell into the CRMS/CFSPID category. PID11: “On the day we went to [the specialist hospital], [the CNS] greeted us out of the lift and made it all ok” Frequently praised aspects of care were specialist knowledge, accessible communication, and continuity of care which demonstrate the benefit of managing these children and their families within specialist centres. Strengths and limitations The use of mixed methods research is a strength of this work, as is its flexibility, which allowed participants to share their experiences in the way they found most comfortable. Our research team have strong grounding in CRMS/CFSPID and qualitative research, with contributions from across the multidisciplinary team allowing internal reflexivity. Our qualitative findings are plausible, often aligning with findings in population groups with similar characteristics or challenges. The PHQ-8 and GAD-7 are commonly used, validated tools, however, they are screening, not diagnostic tools. They also only give a brief snapshot into symptoms in the preceding two weeks, and our qualitative data suggests that there is significant variability over time. As with all qualitative research, we recognise a number of sources of bias in this study; researcher, social desirability and completion. Furthermore, by necessity, our work involves small numbers due to a very small patient population. Conclusions and future research Although initially conducted as a systematic service improvement exercise, the findings are likely to be transferable to other CRMS/CFSPID populations across the UK and centres in other high resource countries and as such, we share our findings here. Our data do not show a high prevalence of depression and anxiety in our cohort however the qualitative data paints a different picture. Parents report a subjective experience of a significant effect on their emotional wellbeing and quality of life, especially in the early years and around medical appointments and respiratory tract infection. As with much research in CRMS/CFSPID, it remains challenging to make blanket recommendations for the whole cohort. Any suggested input must balance the risk of overmedicalisation with the risk of missing opportunities to intervene; in this case by identifying those parents at risk of mental health morbidity secondary to the CRMS/CFSPID label. Routine screening using brief tools for depression and anxiety may be a pragmatic way to tread this line. A longitudinal study, assessing depression and anxiety symptoms in parents after the positive NBS may be helpful to track these phenomena overtime. A matched healthy control cohort could help to understand the mental health impact of the CRMS/CFSPID label in the early months versus the common mental health challenges seen at this time even in those with healthy babies. Our current work focusses on parental emotional wellbeing; it is also important to understand the impact on the children and adolescents themselves, and their siblings without the label. Another important avenue to explore is gaining a better understanding the natural history of CRMS/CFSPID, assessing whether sensitive biomarkers and outcome measures can predict risk. This knowledge would hopefully reduce some of the uncertainty that results in parental emotional distress. Our group are beginning work in this area. Some people with the CRMS/CFSPID label are transitioning through to adult services, and it is important to know how best to follow them up and structure their care delivery. Finally, several of our parents suggested that CRMS/CFSPID specific resources to help explain the label to would be helpful, including resources to support explaining CMRS/CFSPID to their children. The CF Trust and CF Foundation have excellent resources to signpost those newly identified as having CRMS/CFSPID (CFTR-Related Metabolic Syndrome (CRMS) | Cystic Fibrosis Foundation and CFSPID resources hyperlinked). We flag and personalise these at our centre. Funding Supported by the National Institute of Health and Care Research through the Imperial Biomedical Research Centre, Royal Brompton Clinical Research Facility, an Academic Clinical Lectureship (RD) and a Senior Investigator Award (JCD). Declaration of interest LC, RD, MP and JF have no conflicts of interest to declare. References 1. Course, C. W. & Hanks, R. Newborn screening for cystic fibrosis: Is there benefit for everyone? Paediatr Respir Rev 31 , 3–5 (2019). 2. Castellani, C., Massie, J., Sontag, M. & Southern, K. W. Newborn screening for cystic fibrosis. Lancet Respir Med 4 , 653–661 (2016). 3. Barben, J. et al. Updated guidance on the management of children with cystic fibrosis transmembrane conductance regulator-related metabolic syndrome/cystic fibrosis screen positive, inconclusive diagnosis (CRMS/CFSPID). J Cyst Fibros 20 , 810–819 (2021). 4. Bradbury, L., Maitra, A. & Shawcross, A. 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Collection Pediatric Pulmonology Keywords crms/cfspid cystic fibrosis newborn screening quality of life Authors Affiliations Lynne Carty Imperial College London National Heart and Lung Institute View all articles by this author Dobra R 0000-0001-7052-4174 [email protected] Imperial College London National Heart and Lung Institute View all articles by this author Jackie Francis Royal Brompton Hospital Paediatric Services View all articles by this author Michele Puckey Royal Brompton Hospital Paediatric Services View all articles by this author Andrew Bush 0000-0001-6756-9822 Imperial College London National Heart and Lung Institute View all articles by this author Jane Davies 0000-0003-3506-1199 Imperial College London National Heart and Lung Institute View all articles by this author Metrics & Citations Metrics Article Usage 320 views 195 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Lynne Carty, Dobra R, Jackie Francis, et al. 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