{"paper_id":"44abb62e-b1c1-4b63-8f35-dd87b8593f21","body_text":"Unmet health-related needs in patients with Crohn’s disease in Belgium: a mixed-methods study. | 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 Unmet health-related needs in patients with Crohn’s disease in Belgium: a mixed-methods study. Claudia Schönborn, Muriel Levy, Mats De Jaeger, Renaud van Goethem, and 6 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5796448/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 13 Jun, 2025 Read the published version in Archives of Public Health → Version 1 posted 12 You are reading this latest preprint version Abstract Background Measuring health-related unmet needs is crucial for identifying innovation gaps and developing targeted strategies to address them. This study focused on measuring the unmet needs of patients with Crohn’s disease in Belgium using a standardised methodology that facilitates comparisons across different diseases. Crohn’s disease is a chronic condition characterised by a rising incidence over the past century and limited progress in understanding its causes or advancing effective treatments. Methods We conducted an online survey (n=150) and semi-structured interviews (n=20) with adults affected by Crohn’s disease. Descriptive statistics were used to analyse survey results, and thematic analysis was applied to interview transcripts. Unmet needs were classified into health, healthcare, and social aspects. Results The study revealed unmet needs beyond the well-known symptoms of Crohn’s. One in five patients waited over a year for a diagnosis, and 58% considered their treatment burdensome. While at least 75% reported diarrhoea, fatigue, and abdominal cramps as burdensome, around 40% experienced burdensome stress, anxiety, or depression. These symptoms, perceived as invisible, caused embarrassment, impacted sexual and family life, and led to social withdrawal. Psychological support was generally deemed insufficient. Only 50% returned to previous work levels, and 65% experienced financial impacts due to the disease. Conclusions Crohn’s patients experienced not only burdensome physical symptoms, but were also frequently affected by significant psychological symptoms, exacerbated by comorbidities, which significantly affected their quality of life. Although specialist care was adequate, faster diagnosis and better psychological support are needed. Future studies should explore the unmet needs of children and adolescents with Crohn’s disease to complete the picture. Crohn’s disease unmet needs quality of life Figures Figure 1 Contributions to the literature Within a largely supply-driven innovation ecosystem, measuring health-related unmet needs is crucial for transitioning towards a more needs-driven approach. Using a standardised method to measure unmet needs enables valuable comparisons across health conditions, which is vital for guiding effective healthcare prioritisation. There is limited evidence on the unmet needs of Crohn’s disease patients in Belgium Patients with Crohn’s disease were found to face unmet needs that extend beyond physical symptoms. Describing the full spectrum of health-related unmet needs associated with Crohn’s disease is essential to design interventions that are meaningful from the patient perspective. 1. Introduction Over the last century, the incidence of Crohn’s disease (CD) in Europe has increased significantly to levels in 2020 ranging from 0.4 to 22.8 cases per 100 000 person-years.[ 1 ] No specific prevalence measures exist for Crohn’s Disease in Belgium, but it was estimated that in 2021 around 151 per 100 000 individuals lived with an Inflammatory Bowel Disease (IBD) in Belgium.[ 2 ] CD is a life-long, chronic immune-mediated disease, characterised by acute flare-ups and periods of remission.[ 3 , 4 ] Most patients develop their first symptoms between the ages of 15 and 25 years and often experience symptoms for years before receiving a correct diagnosis due to the heterogeneous and non-specific nature of initial symptoms.[ 5 ] Although its exact pathophysiology is not yet fully understood, it is widely accepted that CD is the result of an inappropriate gut mucosal immune response, triggered by dysbiosis in genetically susceptible individuals.[ 6 , 7 ]. It is believed to be caused by an interplay of genetic factors, the immune system, the intestinal microbiota, and other risk factors.[ 8 ] There exists no curative or disease-haltering treatment, therefore the current management aims to relieve symptoms, prevent complications, and improve the quality of life. The therapeutic options include drug therapy (such as anti-inflammatory drugs, immunomodulators, and biologics), surgery, and lifestyle changes such as physical activity, dietary changes and smoking cessation.[ 9 ] After 10 years of being affected by the disease, 30–40% of patients are reported to have developed complications such as fistulae, abscesses, perianal disease, ulcers or strictures which may require surgical resection, or may have developed colorectal cancer.[ 10 – 12 ] Although, the mortality rate of CD is considered low, it is associated with complications and comorbidities, including malnutrition, post-operative complications, and a higher risk of colorectal cancer, which can, in turn, affect life expectancy.[ 13 ] It is well established that CD can profoundly impact patients' lives,[ 14 ] yet few studies have identified the specific unmet needs of patients with CD, as research often focuses on the broader category of IBD.[ 15 – 17 ] To the best of our knowledge, no study to date has employed a standardised needs-assessment method that allows for comparability across diseases and dimensions. Furthermore, a recent narrative review highlighted key unmet needs in the clinical evaluation and treatment of CD, emphasising the necessity for further research into other types of unmet needs.[ 14 ] Understanding which dimensions of patients’ lives are most affected and the resulting consequences is essential for identifying innovation gaps and, based on this, developing targeted strategies—whether pharmaceutical, social, or otherwise. More broadly, accurately measuring the full range of current unmet needs is crucial for transitioning towards a more needs-driven innovation approach. Using a standardised method to measure unmet needs allows for meaningful comparisons across different health conditions, which is vital for guiding effective healthcare prioritisation. This study aimed to investigate the unmet health-related needs of individuals living with Crohn’s disease in Belgium by using a framework developed in the context of the Needs Examination, Evaluation and Dissemination (NEED) project, which allows comparisons across various diseases.[ 18 ] 2. Methods 2.1 Definitions This study is based on the NEED framework, which distinguishes between health-related needs from a patient perspective and a societal perspective, each encompassing healthcare , health , and social needs. [ 18 ] From the patient perspective, healthcare needs concern the needs for healthcare services in a broad sense, including medical treatments, contact with healthcare professionals, but also preventive measures, nursing care, etc. Patient health needs are defined as needs for better health (e.g. in case of illness, disability, or injury) and highlight the burden of the disease, including how much pain, suffering, reduction in wellbeing and quality of life the health condition is causing to patients despite current treatment.[ 18 ] Social needs pertain to aspects of the socio-economic environment of patients, such as social life and work. An unmet need is considered to arise when the available offer or supply of health-related interventions does not, or not completely, meet the existing needs.[ 19 ] The results presented in this article are based on the structure of this framework, focus specifically on the needs from the patient perspective (as opposed to the societal perspective), and are conveyed in a narrative format. The manuscript was written in accordance with the STROBE checklist.[ 20 ] 2.2 Data collection A mixed-methods approach was used, which included an online patient survey and in-depth individual interviews with patients. 2.1 Survey Development of the online questionnaire The questionnaire used in the survey was an adaptation of a generic questionnaire previously developed to identify and assess patients’ needs across various health conditions.[ 21 ] This generic questionnaire was validated by a Delphi panel including representatives from umbrella patient organisations and sickness funds in Belgium. The response options concerning symptoms, treatment options, treatment side-effects, types of healthcare professionals, and services used were adapted to CD. Face validity of the questionnaire (in Dutch) was assessed by two gastro-enterologists specialised in IBD. Afterwards, the questionnaire was translated into French. Recruitment of participants Survey participants were recruited through the Belgian Health Care Knowledge Centre (KCE) website and social media platforms, and posters and flyers in healthcare settings. Information about the survey was also shared with sickness funds, disease-specific and umbrella patient organisations, hospitals, and universities, all of which relayed the information. The survey was available online from May 4 to July 2, 2023. Participants had to be at least 18 years old, having received a diagnosis of Crohn’s Disease from a healthcare professional at least two months prior, and residing in Belgium. If a participant completed the survey on behalf of another adult who met these criteria but could not respond, they were required to answer as if the patient were responding. Analysis of survey results For continuous variables, we calculated the mean and standard deviations (SD), while for categorical variables, we used percentages. Health-related quality of life (HRQoL) utility scores were assigned to respondents’ EQ-5D-5L health state descriptions using the most recent Belgian value set.[ 22 ] The EQ-5D-5L utility values were estimated before and after the onset of the disease. A paired-sample t-test was conducted to determine whether there was a significant difference between the mean utility scores before versus after the onset of the disease. Fisher’s exact test was used to analyse categorical variables. The significance level was set at 0.05 for all statistical tests. All statistical analyses were performed using R version 4.3.0. 2.2 Interviews Development of the interview guide The interview guide was based on the generic tool developed in Maertens de Noordhout et al. (2022)[ 21 ], and adapted to CD. The interview guide was finalised in French and then translated into Dutch. The final interview guide covers: patient journeys leading to the diagnosis, symptomatic impact of the disease on patient’s lives, treatment, encountered obstacles, information and support networks, relationships with the medical profession, and social relations. Selection of participants Interview participants were chosen from survey respondents who expressed their willingness to participate. To ensure a diverse representation, the selection among volunteers was based on specific characteristics (native language, age, time since diagnosis, and treatment type). Data collection process Interviews were conducted via Teams© in July and August 2023 by French or Dutch native-speaking researchers and were recorded and transcribed verbatim. To ensure confidentiality, all names of participants, institutions, and care providers were anonymized. Analysis of interviews Qualitative thematic analysis was performed using NVIVO® software. Native speakers coded the interviews, and two researchers collaborated to develop a shared nodes tree, which served as the structural foundation for reporting the research results. 2.3 Ethics The study received approval from the ethics committee of the ‘Erasmus Hospital Brussels’ (P2023/148/B4062023000088). 3. Results 3.1 Participants’ characteristics Survey participants Of the 258 individuals who initiated the survey, five were ineligible. Questionnaires missing mandatory responses were excluded (n = 103). Consequently, the final dataset included 150 respondents, out of which 5% were proxies responding on behalf of a person affected by Crohn’s who were unable to respond themselves (see Supplementary Fig. 1). The sample consisted of 72% women, the mean age was 43.4 years (SD: 13.7) and 57% of participants had a university degree (Table 1 ). The majority of participants (62%) were diagnosed more than ten years ago and around one quarter had undergone surgery due to CD. Table 1 Survey participants’ characteristics (n = 150) Variable n (%) Person affected by Crohn’s Themselves 142 (94.6) Another adult 8 (5.3) Gender Woman 108 (72.0) Man 42 (28.0) Language French 85 (56.7) Dutch 65 (43.3) Residence region Wallonia 73 (48.7) Flanders 67 (44.6) Brussels 10 (6.7) Age group (in years) 18–25 9 (6.0) 25–44 74 (49.3) 45–64 54 (36.0) 65–74 9 (6.0) ≥ 75 4 (2.7) Paid work before diagnosis Yes 117 (78.0) Occupation just before diagnosis Employee 52 (34.7) Worker 36 (24.0) Disabled 2 (1.3) Retired 0 Student 48 (32.0) Self-employed 4 (2.7) Unemployed 3 (2.0) Other 5 (3.3) Occupation today Employee 54 (36.0) Worker 45 (30.0) Disabled 15 (10.0) Retired 14 (9.3) Student 10 (6.7) Self-employed 6 (4.0) Unemployed 2 (1.3) Other 8 (5.3) Highest level of education Secondary education or less* 56 (37.3) University degree** 86 (57.3) Other diploma*** 8 (5.4) Time since diagnosis 2 to 6 months 6 (4.0) 6 months to 2 years 15 (10.0) 2 to 5 years 17 (11.3) 5 to 10 years 19 (12.7) More than 10 years 93 (62.0) Self-reported treatment for CD 1 Prescription drugs 139 (95.9) Non-prescription drugs 18 (12.4) Nutrition support 34 (23.4) Surgical procedures 36 (24.8) Physiotherapy 25 (17.2) Others 10 (6.9) Flare-up status at time of survey Yes 28 (18.7) No 116 (77.3) I don’t know 6 (4.0) Number of comorbidities 1 to 2 51 (34.0) 3 to 4 22 (14.7) 5 or more 13 (8.7) None reported 64 (42.7) * No diploma or primary education, Lower secondary education, Upper secondary education; **Bachelor's, Master's, or Doctoral degree; *** Other diploma, Not sure. 1 Five respondents indicated “No” to the question if they are receiving or have received a treatment for CD and were therefore excluded from the denominator. Table 2 Unmet health-related needs of survey participants Unmet need indicator % of survey participants (n = 150) Unmet healthcare need Very or quite burdensome treatment 17.9 Very or rather burdensome treatment side-effects (if ≥ 10%) Fatigue or exhaustion 64.1 Weight gain 28.3 Skin irritation or eczema 23.5 Diarrhoea 19.3 Nausea and/or vomiting 17.2 Change of external characteristics 14.5 Infection 11.0 Received insufficient or no information 14.6 Information provided was not very clear or not clear at all 8.7 Would have liked to be more involved in treatment choice 1 55.3 Waited more than one year between first consultation and CD diagnosis 19.3 Did not receive care when needed 13.3 Unmet health need Very or rather burdensome physical symptom (if ≥ 30%) Diarrhoea 78.0 Fatigue or exhaustion 76.0 Cramps 70.0 Lack of energy 66.7 Urgency or stool urge 63.3 Continuous abdominal pain 48.7 Joint pain or inflammation 48.0 Headache 37.3 Nausea or vomiting 36.0 Anal pain 35.3 Dry, painful or itchy skin or rash 30.7 Very or rather burdensome psychological symptom (if ≥ 30%) Stress 42.7 Fear or anxiety 37.3 Feeling down, depressed, or sadness 37.3 Feelings of restlessness, nervousness or irritability 35.3 Unmet social need Needed social support without receiving it 54.0 After > 30 day sick leave, reduced their working hours or did not return to work due to current state of health 2 45.3 Impacted financially by medical expenses 56.0 1 Denominator was n = 94. 2 Deninator was n = 64. Interview participants As planned, 20 interviews were conducted. Among those interviewed, 60% were female, 75% had been diagnosed 10 or more years ago, and 40% had undergone surgery due to CD (see Supplementary Table 1) 3.2 Unmet healthcare needs Diagnostic timing Nearly half of respondents decided to seek medical attention within three months following the onset of symptoms. Once they decided to consult, 50% were able to find medical attention within a month. Almost 60% received the diagnosis within two months of their first consultation, but 19% waited over a year for a diagnosis. During the interviews, patients explained that the non-specific nature of their symptoms initially led to differential diagnoses focusing on common gastrointestinal issues like irritable bowel syndrome or viral gastroenteritis. Combined with general practitioners' lack of familiarity with Crohn’s disease, these delays sometimes resulted in frustration and feelings that their condition was not adequately investigated. Some participants only received the correct diagnosis once they were referred to a university hospital. Certain patient characteristics (e.g., being a healthcare professional, having a relative who is a doctor, participating in clinical trials) were reported to speed up the diagnostic process by facilitating quicker access to medical appointments. Study participants also reflected on the compartmentalization of medical specializations, noting that doctors sometimes focused narrowly on their own domain, delaying the recognition of broader systemic issues. The high number and the invasiveness of diagnostic procedures (ultrasound, biopsy, blood tests, stool analysis, gastroscopy, colonoscopy, and entero-MRI) were perceived by patients as lengthy and burdensome. \"We fiddled a little bit with the diagnosis, I have to admit that... I even went as far as [Name of University Hospital] in an ambulance to see a specialist at the time, to confirm the disease. I remember being hospitalized for a long time, I think I stayed in the hospital for a month and a half, on an empty stomach, with a central channel – which had to be changed twice by the way […].” Accessibility of care Thirteen percent of participants mentioned that they did not receive care when they needed it. The most common reported reasons for foregone care were the long waiting times to get an appointment (5%), the lack of competent staff (5%), and the lack of information (4%). During the interviews, patients also highlighted geographic barriers to receiving the needed care. Especially if you want to go to specialised care, in my case you have to bridge a certain distance, [region-region]. Indeed, that is not next-door. Effectiveness of treatment One of the most important unmet healthcare needs expressed during the interviews was the need for improved treatment or management of gastrointestinal symptoms, which profoundly impacted patients’ HRQoL, their psychological well-being, and social life. While surgical treatments were often deemed effective, patients noted the difficulty of finding a lasting pharmaceutical solution, as effectiveness was frequently temporary, requiring new trials over time. They also found drastic diets unsustainable long-term due to their restrictive nature and social challenges, with no clear dietary guidelines available, leading to a reliance on personal trial and error. \"Since I've had surgery and I've been on treatment, we've finally found the right treatment because I've been on five different treatments. I'm on the fifth I think now, I have absolutely nothing left.\" \"No, it really didn't work, so we changed. Then I took another molecule […]. It didn't work either. I think that after a year I was already unresponsive and here I am […] it's been a month and a half that I'm really not well [...] so I'm at the stage where I'm wondering if it's still worth taking a treatment.” Experienced burden of treatment and its side-effects Over 85% of participants expressed being “very satisfied” or “satisfied” with their treatment, despite 17.9% finding it very or rather burdensome. The primary reason for this burden was side-effects (84.6%). During the interviews, participants reported that treatments imposed constraints on their lives, activities, and access to care, due to being time-consuming or complex, requiring significant self-discipline, regular hospital visits and routine investigations (e.g., blood tests), or their practical considerations such as necessitating refrigerator storing. Maintaining long-term treatment discipline was particularly difficult without close clinician follow-up. \"It's not just Crohn's, there are the operations, there are the effects of the operations, it plays a psychological role because we're not prepared to go back and forth to the hospital. We were promised that the bag would be the miracle solution, and it's true that I had regained quality of life in terms of trips to the toilet and the pain, but I had other things in return.” The side-effects of treatment that were most frequently reported as very or rather burdensome were fatigue or exhaustion (64.1%), weight gain (28.3%), skin irritation or eczema (23.5%), and diarrhoea (19.3%). However, it was often unclear whether diarrhoea and fatigue were symptoms of the disease or side effects of the treatment. Patients mentioned that the constraints of medication sometimes led them to question whether continuing treatment was worth it. Some expressed a desire to stop taking the drugs due to severe side effects or as a personal goal, not wanting lifelong dependence on medication. Side effects from surgery, such as changes in abdominal appearance, were also noted as challenging to cope with daily. “Yes, I also have that as an additional side-effect of taking that medication. So it is not Crohn's-related, but medication-related that I have skin cancer. […] According to the dermatologist, the major cause is [name immunomodulator A].“ \"I was nauseous all the time, nothing was going through [...] I had loss of appetite. I'm going to say, I was making myself food, I was like, \"oh, that looks great\", and then when I got to the front of the dish, it was impossible to eat.” Quality of care Over 75% of patients were satisfied with their healthcare providers. The main areas of dissatisfaction with healthcare mentioned in the interviews were the limited availability of specialists and nurses causing rushed consultations, the fact that rotation between senior and junior staff affected continuity of care, and the perceived lack of competence in some physicians. The latter was evidenced by post-operative complications, inappropriate medication dosages, or a general lack of professionalism. Patients criticized the lack of a holistic approach, the dehumanization of care making them feel “like a number”, and its over-specialization leading to fragmented care. Navigating through different medical specializations was challenging for some, despite recognizing the benefits of a multidisciplinary approach. Participants emphasized the useful inclusion of other team members in the care continuum such as nurses and social workers. Better guidance and structured care pathways were suggested, similar to pathways for diabetes or renal failure. In addition, there was an expressed need for psychological support alongside pharmacological treatment and medical procedures. “It goes well as long as you can keep seeing the same doctor, who knows your trajectory, who already has experience that you react or don't react to things in a particular way and who doesn't want to reinvent the wheel every time. In the University [hospital] it's the assistants. And every time different assistants, assistants who don't know my file. [...] And then it happens again. 'In the future, ma'am, you will have to tell them yourself that they should put [name artificial tears] in your eyes. And then I'm like, okay, the responsibility is being placed on me again.“ \"So you see, we feel that the medical system is under pressure, we feel that visits with the surgeon are 5 minutes, quick quick, we talk but there is no examination, there is really nothing in the end.\" Information Around 15% of participants reported that they received insufficient or no information, and 9% reported that information provided was not very clear or not clear at all. During the interviews, the reasons for dissatisfaction with the information received included a lack of proactivity from healthcare professionals, insufficient guidance on which specialists to consult, and the fact that information was shared too quickly and was sometimes difficult to understand. The importance of how doctors communicated the diagnosis was also highlighted, with key factors being compassion, frankness, and time devoted to explaining the disease and its consequences. \"Oh no, no, my doctor, uh... I'm telling you, sometimes I'm the one who has to ask for a vaccination: \"Do you think I should get vaccinated, Doctor?\" So \"yes, obviously you have to get vaccinated, because you have low immunity.\" \"Oh well, thank you for telling me!\" \"Do I have to go see the dermatologist Doctor?\", \"Oh yes yes, of course you...\". But frankly no, it's not through my doctor that I found the info, no, it's me.” Furthermore, 28% of survey participants expressed a desire to be more involved in decisions regarding their treatment. During the interviews, some patients reported having been informed and having the final say in treatment choices, while others felt they were expected to follow directives. Patients trusted their doctors' expertise but sometimes hesitated whether to challenge their recommendations or felt their input was not heard, influenced by a fear of contradicting the doctor's authority. \"At one point he told me 'you absolutely have to take corticosteroids again', I said 'no, I don't want to'. So basically we made a deal (laughs), ... It's laughable but that's the way it is.” \"The contrast is evident again between [hospital], for example, when you say okay, we're going to start with this, and it's like okay, this is it. While in [region], they literally had brochures, you name it, those and those options, that you can choose from: that, that, that or that. So you did indeed have much more say, much more control. As it were, patients had the last word in [region].” 3.3 Unmet health needs Impact on general health-related quality of life (HRQoL) The EQ-5D-5L utility score showed a significant decrease from 0.85 (95% confidence interval [CI]: 0.82; 0.88) before disease onset to 0.70 (95% CI: 0.67; 0.74) at the time of the survey (mean difference − 0.15; 95% CI: -0.20; -0.10; p < 0.0001), indicating a reduction in HRQoL related to the disease. Crohn’s disease led to an increase in the proportion of slight, moderate and severe health problems in all EQ-5D-5L dimensions (Fig. 1 ). The most important increases were in difficulties performing usual activities (+ 55.3% points), pain/discomfort (+ 46.0% points), mobility (+ 34.7% points), and anxiety/depression (+ 30.0% points), compared to a smaller rise in the self-care dimension (+ 10.6% points). The highest increase in number of individuals reporting severe problems concerned the ability to carry out usual activities (+ 9.4% points) and anxiety/depression (+ 4% points). Few participants reported extreme problems across any EQ-5D-5L dimensions. Interviewees highlighted their emotional and sexual life as another dimension negatively impacted by the disease, and which could occasionally lead to the deliberate choice not to have children. \"For example, sexually as well. So if you sleep somewhere else now, because you have no control over your anus, in my case, and you go to sleep somewhere, or with someone, or in a hotel or whatever. So, in your head, knowing that you are not at home, if you encounter that at home, it's not a problem, you clean it up and it's... That you try to cover up. That's not easy. Sexually, it's the same thing. It's not... so logical for someone who suddenly loses their bowel movements, that's not... You can't just flip a switch, and that's not easy. And if you do enter into new relationships, how do you explain it?\" Impact on physical health The physical symptoms that were reported as very or rather burdensome by the highest number of participants were diarrhea (78.0%), fatigue or exhaustion (76.0%), and abdominal cramps (70.0%) (Table 3). Interviewed patients described burdensome consequences of the physical symptoms, including a permanent state of weakness which required more rest thereby impacting daily activities (e.g. driving). Been home for a week, and I found the fatigue very heavy, I would always sleep and sleep and at one point I said, I have to get over it. Impact on psychological health The psychological symptoms that were reported as very or rather burdensome by the highest number of participants were stress (42.7%), fear or anxiety (37.3%), and feeling down, depressed or sad (37.3%) (Table 3). The interviewees mentioned that the invisibility of the disease affected them psychologically. One cause of stress was the fear of the condition progressing over time. While treatment ineffectiveness caused hopelessness in patients, the physical symptoms, like uncontrolled bowel movements, caused embarrassing and socially awkward situations with a significant psychological impact. \"Physically, it's not visible when we're not feeling well, so it's not like having a broken arm or a cast on your foot, people don't see it and so it's like 'stop complaining'. We're in pain, we turn white because of the pain, but people don't realize it. So no, the people around us don't understand.” \"I went for a walk, I had just eaten, and now, fortunately, it was in the woods but [...] Then a little accident and then psychologically, well, I wasn't ready. And it's silly because we tell ourselves it can happen to anyone in fact but, yes it still has a psychological impact.” 3.4 Unmet social needs Impact on social life A bit more than half of respondents (54%) reported needing social support in at least one area without receiving it. The most frequently reported unmet social support needs included talking to other patients about the disease (23.6%), administrative or social support (20.1%), more help with day-to-day activities (16.9%), and talking about things other than health problems (16.2%). Interviewed patients mentioned that they had to change their social and leisure activities, such as sports and travelling, to take into account the implications of their disease (lacking energy, medicine transportation issues, severity of symptoms). They often hesitated or refused social activities to avoid embarrassing situations due to insufficient access to toilets. This, they explained, lead to isolation and withdrawal from family life and social interactions. Changes in physical appearance due to the illness itself or due to its treatment also increased the desire to avoid social activities. \"Sometimes we're afraid to go to people's houses, for example to sleep in people's homes, I don't dare to sleep too much. Because sometimes the consequences are a little embarrassing, but if after a while, to have said I don't do all this, you end up getting used to it and you live well with it.” I've already said that to my partner, I would really like to do yoga, but I sometimes don't dare because I think, suppose I have gas in the intestine or air in the intestines and that flies out unwillingly, because that happens sometimes, then it's not so nice. Support from loved ones was considered crucial, especially during medical appointments or severe flare-ups. Importance was given to empathy, help with daily tasks, and ensuring access to toilets. Some study participants considered relationships with other Crohn's Disease patients beneficial for exchanging experiences and finding encouragement. For them, patient support groups provided valuable information and interaction opportunities. However, other participants found these interactions counterproductive due to frequent negativity and misinformation and preferred not to be reminded of their illness. Another challenge that was raised by interviewees concerned the administrative hurdles associated with the disease. In Belgium, obtaining reimbursement for certain drugs required annual application renewal, causing stress and potential treatment interruptions. The process involved multiple administrative steps and communication channels, leading to delays and frustration. This meant that patients spent significant time on administrative tasks, impacting their professional and personal lives. Pharmacists were identified as precious in assisting with navigating the administrative procedures and ensuring medication availability. Fortunately, I have a good partner who supports me enormously in this and is very understanding in that area. That makes a difference. For example, he will do the cleaning and cooking. He's going to take a lot off your hands. The moments when I have to lie down on the couch or sleep longer or something, for example, he actually takes on a lot. I say it, the people at the hospital themselves who give a lot of support, also know that there is an association where you can always ask questions or meet fellows. The fact that you are not alone. I am well surrounded. I have a lot of people who understand me and are going to assist me. Impact on work Two thirds (68.8%) of respondents who were employed at the time of their diagnosis had to interrupt their work for at least one month. Among these, 28.1% ended up reducing their work hours and 17.2% did not return to work due their disease. Interviewed patients explained that Crohn's led to work absenteeism due to various reasons, including flare-ups, poor general health, medical appointments, and hospitalisations. Repeated absences and productivity loss caused guilt, and feelings of injustice due to criticism or disciplinary actions. In addition, access to toilets at work, especially in certain jobs, was a significant issue. Despite these constraints, many patients wanted to continue working as if they were not ill. \"That is to say, I will have to consider a 4/5ths because I accept the fact that I will never be able to work full-time again, that I have to preserve my health. But that means that again for my pension, for etc., well... I will have done a part-time job, even though I would like nothing better than to work full-time.” Financial consequences of disease Fifty-six percent of participants reported experiencing a financial impact due to medical costs. Interviewees also mentioned being financially affected by the accumulation of many small non-healthcare expenses, such as parking fees, household help, toilet access fees, and nappies during flare-ups. Some investigations or treatments (e.g. probiotics, vitamins, food supplements) were minimally reimbursed or not reimbursed at all. Frustration was expressed concerning private life insurance premiums increasing because of Crohn’s or even excluding them from coverage. \"Magnesium, calcium when I was taking cortisone etc., well all that, it's still quite expensive, probiotics etc. Well these are things that you have to take as a supplement in the end, but uh... So all this is not reimbursed, but on the other hand all the medical appointments related to the disease, so all the blood tests, additional analyses, the little that is still at our expense is still reimbursed by the mutual insurance company. But here's the thing, not everything that's a treatment add-on is reimbursed. And so sometimes I get it for […] Yes, 150€ per month some months.” 4. Discussion The patient survey and interviews provided an in-depth insight into the perceived unmet health-related needs of people with Crohn’s Disease in Belgium. The disease had a substantial impact on individuals’ health-related quality of life. The most burdensome physical symptoms were diarrhoea, fatigue, and abdominal cramps, while stress, anxiety, and depression were the leading psychological challenges. The invisibility of Crohn’s sometimes led to feelings of illegitimacy, where patients felt misunderstood by family, employers, and colleagues. Unmet healthcare needs mainly concerned diagnostic delays, the lack of effective treatment, high treatment burden, and the lack of psychological support. The diagnostic process was lengthy and burdensome for many, with nearly 1 in 5 participants waiting over a year for a diagnosis. This was attributed to insufficient awareness among GPs, the need for invasive investigations, long waiting times for medical imaging, and the compartmentalisation of medical specialisation(s). One in six patients found their treatment burdensome primarily due to side-effects like fatigue, weight gain, and skin problems. Survey participants highlighted that Crohn’s also had a significant impact on their social life, requiring adaptations in their diet, leisure activities, sexual life, and social habits. These changes were primarily driven by the severity of symptoms and by the fear of experiencing socially embarrassing situations. Almost half the working individuals with Crohn’s had to reduce work or had stopped working due to their illness. A financial impact of the disease was reported by more than half of the survey participants, attributed to loss of income due to the reduced working ability, medical expenses, and non-healthcare costs. Thirteen percent of Crohn’s patients also reported not having received social support when they had needed it, which included particularly administrative support. Some of the unmet health-related needs identified in this study for individuals living with CD in Belgium were also identified in other studies. The impact of the disease on psychological health and the lack of psychological support was highlighted in two previous studies.[ 23 , 24 ] Regarding unmet healthcare needs, other studies also noted the need for improved treatment of gastro-intestinal symptoms, because of their high impact on HRQoL and well-being, and expressed concerns regarding the safety and long-term effects of treatment.[ 15 ] In the IBD2020 survey, which covers eight European countries, communication with healthcare providers was identified by patients with CD and ulcerative colitis as one the most important drivers of care quality.[ 25 ] Scheurlen et al. (2023) reported that pharmacological and surgical treatment complications and treatment failure emphasized the need for research on standardised clinical approaches, reliable biomarkers, new treatment agents, and addressing diverse clinical manifestations.[ 14 ] Regarding the unmet social needs, a European survey (2010–2011) showed that 40% of individuals with IBD had made adjustments in their working lives (e.g. flexible hours, part-time), 25% were absent from work for more than 25 days, and 31% even lost or quit their job due to their disease, which posed financial burdens on patients and their families.[ 26 ] This compares with 69% in our survey of working individuals who interrupted their work for at least 30 days, and out of these, 28% returning to work with reduced working schedule and 17% not returning to work at all. Because in our survey this question was asked only to those individuals who had interrupted work as a consequence of the disease, we do not have the percentages for the whole sample. This study uses a comprehensive patient-centered approach to provide evidence on the unmet health-related needs of individuals with CD. This evidence can help to develop patient relevant outcome measures and should be incorporated in the decision-making processes of various healthcare stakeholders, including policymakers, researchers and the industry, to foster to a more needs-driven healthcare innovation and policy system for individuals living with CD. Despite its contributions, there are some methodological considerations that must be taken into account for the interpretability of the study. The recruitment through patient organisations, medical professionals and hospitals might have excluded individuals at the margins of healthcare (e.g. lacking access to healthcare or infrequently followed-up). While these individuals might be few, their unmet needs are likely more significant. The online survey method might have excluded vulnerable populations lacking internet access or technological skills, as reflected by the overall high education level of participants. Administering the survey online was a way of collecting data in a timely manner while allowing to include a large proportion of the patient population, however this choice might have led to an underestimation of the unmet needs of the population of individuals living with CD. The fact that many respondents initiated the survey but subsequently closed it (103 out of 253) may indicate that those who eventually participated were different to those who didn’t (e.g. had more time available, or more severe symptoms increasing their motivation to participate). However, because we have no data on non-participants we cannot draw any conclusions. Concerning the selection of interviewees, it was not possible to achieve a perfect representation of the full spectrum of all combinations of patient characteristics, which may have resulted in the omission of the specific needs of particular profiles. Furthermore, the unmet needs relating to past events (e.g. diagnosis) might be outdated due to changes in healthcare organisation. The exclusion of participants under the age of 18 was deliberate because the current questionnaire is not adapted for younger individuals. Future studies focusing on the health, healthcare, and social unmet needs of children and adolescents with Crohn’s would be a vital complementary study. 5. Conclusions This study shows that individuals with CD have important unmet needs beyond the more commonly known ‘unmet medical needs’. Despite improvements in diagnostic accuracy and more surgery-sparing treatments, CD remains a life-long, early-onset illness with a significant impact on quality of life, including sexual life, social life and working ability. Significant delays in diagnosis were observed, as well as insufficient psychological support. Incidence is expected to rise, and the disease remains unpreventable, insufficiently treated, and individuals insufficiently supported. The findings of this study may assist health policymakers, regulators, HTA bodies, payers, researchers and the pharmaceutical industry in taking into account the unmet health-related needs of patients in their decision-making processes. Declarations Ethics approval and consent to participate All study participants provided written informed consent. The study received approval from the ethics committee of the ‘Erasmus Hospital Brussels’ (P2023/148/B4062023000088). Consent for publication Not applicable. Availability of data and materials The data supporting the results presented in this article can be found in the supplementary material, as well as in the publicly available NEED database: https://healthinformation.sciensano.be/shiny/NEED/ [27] Competing interests The authors declare that they have no competing interests. Funding This work was supported by the Belgian Health Care Knowledge Centre and the Belgian Science Policy (grant RT/23/NEED). Authors' contributions ML: study design, data analysis, writing up of the first draft of the paper; CS: study design, data analysis, writing up of the first draft of the paper; MDJ: study design, data analysis, reviewing the article; RG: patient recruitment, data collection, data analysis, reviewing the article; UL: data analysis, reviewing the article; RC: data analysis, reviewing the article; RDP: study design, data analysis, reviewing the article; LK: study design, data analysis, reviewing the articles; IC: study design, data analysis, reviewing the article; CMdN: study design, data analysis, writing up of the first draft of the paper. Acknowledgements We would like to thank Jonas Dobbelaere, Tessa van Montfort, Yan Zhi Tan for analysis. Thank you to Peter Buydens, Peter Bossuyt, Sophie Vieujean and Severine Vermeire for their clinical expertise. We would also like to acknowledge the patient associations and healthcare providers for helping distribute the survey, and Sabine Corachan and Nathalie Swartenbroekx for the project management. A special thank you to all participants in the study. References Zhao M, Gonczi L, Lakatos PL, Burisch J. The Burden of Inflammatory Bowel Disease in Europe in 2020. J Crohns Colitis. 2021 Sep 25;15(9):1573-87. Wang R, Li Z, Liu S, Zhang D. Global, regional and national burden of inflammatory bowel disease in 204 countries and territories from 1990 to 2019: a systematic analysis based on the Global Burden of Disease Study 2019. BMJ Open. 2023 Mar 28;13(3):e065186. Abraham BP, Mehta S, El-Serag HB. Natural history of pediatric-onset inflammatory bowel disease: a systematic review. J Clin Gastroenterol. 2012 Aug;46(7):581-9. Feuerstein JD, Cheifetz AS. Crohn Disease: Epidemiology, Diagnosis, and Management. Mayo Clin Proc. 2017 Jul;92(7):1088-103. Cushing K, Higgins PDR. Management of Crohn Disease: A Review. Jama. 2021 Jan 5;325(1):69-80. Baumgart DC, Carding SR. Inflammatory bowel disease: cause and immunobiology. Lancet. 2007 May 12;369(9573):1627-40. Carriere J, Darfeuille-Michaud A, Nguyen HT. Infectious etiopathogenesis of Crohn's disease. World J Gastroenterol. 2014 Sep 14;20(34):12102-17. Guan Q. A Comprehensive Review and Update on the Pathogenesis of Inflammatory Bowel Disease. J Immunol Res. 2019;2019:7247238. Turner D, Ricciuto A, Lewis A, D'Amico F, Dhaliwal J, Griffiths AM, et al. STRIDE-II: An Update on the Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) Initiative of the International Organization for the Study of IBD (IOIBD): Determining Therapeutic Goals for Treat-to-Target strategies in IBD. Gastroenterology. 2021 Apr;160(5):1570-83. Burisch J, Jess T, Martinato M, Lakatos PL, EpiCom E. The burden of inflammatory bowel disease in Europe. J Crohns Colitis. 2013 May;7(4):322-37. Vavricka SR, Schoepfer A, Scharl M, Lakatos PL, Navarini A, Rogler G. Extraintestinal Manifestations of Inflammatory Bowel Disease. Inflamm Bowel Dis. 2015 Aug;21(8):1982-92. Jess T, Gamborg M, Matzen P, Munkholm P, Sørensen TI. Increased risk of intestinal cancer in Crohn's disease: a meta-analysis of population-based cohort studies. Am J Gastroenterol. 2005 Dec;100(12):2724-9. Bewtra M, Kaiser LM, TenHave T, Lewis JD. Crohn's disease and ulcerative colitis are associated with elevated standardized mortality ratios: a meta-analysis. Inflamm Bowel Dis. 2013 Mar;19(3):599-613. Scheurlen KM, Parks MA, Macleod A, Galandiuk S. Unmet Challenges in Patients with Crohn’s Disease. Journal of Clinical Medicine. 2023;12(17):5595. Schoefs E, Vermeire S, Ferrante M, Sabino J, Lambrechts T, Avedano L, et al. What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease? A qualitative patient preference study. J Crohns Colitis. 2022 Sep 27. Revés J, Ungaro RC, Torres J. Unmet needs in inflammatory bowel disease. Current Research in Pharmacology and Drug Discovery. 2021 2021/01/01/;2:100070. Irvine EJ. Patients' fears and unmet needs in inflammatory bowel disease. Alimentary Pharmacology & Therapeutics. 2004;20(s4):54-9. Maertens de Noordhout C, Levy M, Claerman R, De Jaeger M, De Pauw R, Kohn L, et al. Needs Examination, Evaluation and Dissemination (NEED): assessment framework. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge Center (KCE); 2024 03/2024. Report No.: 377C1. Incerti D, Borowne J, Baker CL, Makinson G, Goren A, Willke R, et al. An empirical tool for estimating the share of unmet need due to healthcare inefficiencies, suboptimal access, and lack of effective technologies. BMC Health Serv Res. 2019;19(113). von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet. 2007 Oct 20;370(9596):1453-7. Maertens de Noordhout C, Detollenaere J, Primus-de Jong C, Kohn L, Devleesschauwer B, Charafeddine R, et al. Identifying Patient needs in Belgium: methodological approach and application. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge Centre (KCE); 2022. Report No.: 348. Bouckaert N, Cleemput I, Devriese S, Gerkens S. An EQ-5D-5L Value Set for Belgium. Pharmacoecon Open. 2022 Nov;6(6):823-36. Schoefs E, Vermeire S, Ferrante M, Sabino J, Lambrechts T, Avedano L, et al. What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease? A qualitative patient preference study. J Crohns Colitis. 2022:jjac145. Neuendorf R, Harding A, Stello N, Hanes D, Wahbeh H. Depression and anxiety in patients with Inflammatory Bowel Disease: A systematic review. Journal of psychosomatic research. 2016 Aug;87:70-80. Irving P, Burisch J, Driscoll R, Olsson M, Fullarton JR, Rodgers-Gray BS, et al. IBD2020 global forum: results of an international patient survey on quality of care. Intestinal research. 2018 Oct;16(4):537-45. Lonnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life -- discovering the true impact. J Crohns Colitis. 2014 Oct;8(10):1281-6. NEED collaborators. Unmet health-related needs for three selected health conditions in Belgium (v2024-10-10). Zenodo 2024. Additional Declarations No competing interests reported. Supplementary Files SupplementaryCrohnAPH.docx Cite Share Download PDF Status: Published Journal Publication published 13 Jun, 2025 Read the published version in Archives of Public Health → Version 1 posted Editorial decision: Revision requested 29 Mar, 2025 Reviews received at journal 29 Mar, 2025 Reviews received at journal 14 Mar, 2025 Reviews received at journal 13 Mar, 2025 Reviewers agreed at journal 12 Mar, 2025 Reviewers agreed at journal 06 Mar, 2025 Reviewers agreed at journal 05 Mar, 2025 Reviewers agreed at journal 05 Mar, 2025 Reviewers invited by journal 11 Feb, 2025 Editor assigned by journal 14 Jan, 2025 Submission checks completed at journal 14 Jan, 2025 First submitted to journal 09 Jan, 2025 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. 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12:23:30\",\"currentVersionCode\":1,\"declarations\":\"\",\"doi\":\"10.21203/rs.3.rs-5796448/v1\",\"doiUrl\":\"https://doi.org/10.21203/rs.3.rs-5796448/v1\",\"draftVersion\":[],\"editorialEvents\":[{\"content\":\"https://doi.org/10.1186/s13690-025-01632-1\",\"type\":\"published\",\"date\":\"2025-06-13T15:57:29+00:00\"}],\"editorialNote\":\"\",\"failedWorkflow\":false,\"files\":[{\"id\":74076283,\"identity\":\"cf962a8a-5dac-4afa-b6d4-9a410b6e49d1\",\"added_by\":\"auto\",\"created_at\":\"2025-01-17 13:39:04\",\"extension\":\"png\",\"order_by\":1,\"title\":\"Figure 1\",\"display\":\"\",\"copyAsset\":false,\"role\":\"figure\",\"size\":154780,\"visible\":true,\"origin\":\"\",\"legend\":\"\\u003cp\\u003eSelf-reported level of problems on each EQ-5D-5L dimension before the onset of first symptoms of CD and today (n=150)\\u003c/p\\u003e\",\"description\":\"\",\"filename\":\"1.png\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-5796448/v1/2e7cb589e871f48a587deb1d.png\"},{\"id\":84726783,\"identity\":\"ff0ff916-359a-4721-a7ad-5413033b5377\",\"added_by\":\"auto\",\"created_at\":\"2025-06-16 16:08:16\",\"extension\":\"pdf\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"manuscript-pdf\",\"size\":1289651,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"manuscript.pdf\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-5796448/v1/b190c794-fe22-4931-b8c7-11d0b68c4895.pdf\"},{\"id\":74076286,\"identity\":\"cdf4c27b-9540-453c-9367-529e5e236483\",\"added_by\":\"auto\",\"created_at\":\"2025-01-17 13:39:05\",\"extension\":\"docx\",\"order_by\":0,\"title\":\"\",\"display\":\"\",\"copyAsset\":false,\"role\":\"supplement\",\"size\":38447,\"visible\":true,\"origin\":\"\",\"legend\":\"\",\"description\":\"\",\"filename\":\"SupplementaryCrohnAPH.docx\",\"url\":\"https://assets-eu.researchsquare.com/files/rs-5796448/v1/732739f6718873682034627e.docx\"}],\"financialInterests\":\"No competing interests reported.\",\"formattedTitle\":\"Unmet health-related needs in patients with Crohn’s disease in Belgium: a mixed-methods study.\",\"fulltext\":[{\"header\":\"Contributions to the literature \",\"content\":\"\\u003cul\\u003e\\n \\u003cli\\u003eWithin a largely supply-driven innovation ecosystem, measuring health-related unmet needs is crucial for transitioning towards a more needs-driven approach.\\u0026nbsp;\\u003c/li\\u003e\\n \\u003cli\\u003eUsing a standardised method to measure unmet needs enables valuable comparisons across health conditions, which is vital for guiding effective healthcare prioritisation.\\u003c/li\\u003e\\n \\u003cli\\u003eThere is limited evidence on the unmet needs of Crohn\\u0026rsquo;s disease patients in Belgium\\u003c/li\\u003e\\n \\u003cli\\u003ePatients with Crohn\\u0026rsquo;s disease were found to face unmet needs that extend beyond physical symptoms.\\u003c/li\\u003e\\n \\u003cli\\u003eDescribing the full spectrum of health-related unmet needs associated with Crohn\\u0026rsquo;s disease is essential to design interventions that are meaningful from the patient perspective.\\u0026nbsp;\\u003c/li\\u003e\\n\\u003c/ul\\u003e\"},{\"header\":\"1. Introduction\",\"content\":\"\\u003cp\\u003eOver the last century, the incidence of Crohn\\u0026rsquo;s disease (CD) in Europe has increased significantly to levels in 2020 ranging from 0.4 to 22.8 cases per 100 000 person-years.[\\u003cspan citationid=\\\"CR1\\\" class=\\\"CitationRef\\\"\\u003e1\\u003c/span\\u003e] No specific prevalence measures exist for Crohn\\u0026rsquo;s Disease in Belgium, but it was estimated that in 2021 around 151 per 100 000 individuals lived with an Inflammatory Bowel Disease (IBD) in Belgium.[\\u003cspan citationid=\\\"CR2\\\" class=\\\"CitationRef\\\"\\u003e2\\u003c/span\\u003e] CD is a life-long, chronic immune-mediated disease, characterised by acute flare-ups and periods of remission.[\\u003cspan citationid=\\\"CR3\\\" class=\\\"CitationRef\\\"\\u003e3\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR4\\\" class=\\\"CitationRef\\\"\\u003e4\\u003c/span\\u003e] Most patients develop their first symptoms between the ages of 15 and 25 years and often experience symptoms for years before receiving a correct diagnosis due to the heterogeneous and non-specific nature of initial symptoms.[\\u003cspan citationid=\\\"CR5\\\" class=\\\"CitationRef\\\"\\u003e5\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eAlthough its exact pathophysiology is not yet fully understood, it is widely accepted that CD is the result of an inappropriate gut mucosal immune response, triggered by dysbiosis in genetically susceptible individuals.[\\u003cspan citationid=\\\"CR6\\\" class=\\\"CitationRef\\\"\\u003e6\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR7\\\" class=\\\"CitationRef\\\"\\u003e7\\u003c/span\\u003e]. It is believed to be caused by an interplay of genetic factors, the immune system, the intestinal microbiota, and other risk factors.[\\u003cspan citationid=\\\"CR8\\\" class=\\\"CitationRef\\\"\\u003e8\\u003c/span\\u003e] There exists no curative or disease-haltering treatment, therefore the current management aims to relieve symptoms, prevent complications, and improve the quality of life. The therapeutic options include drug therapy (such as anti-inflammatory drugs, immunomodulators, and biologics), surgery, and lifestyle changes such as physical activity, dietary changes and smoking cessation.[\\u003cspan citationid=\\\"CR9\\\" class=\\\"CitationRef\\\"\\u003e9\\u003c/span\\u003e] After 10 years of being affected by the disease, 30\\u0026ndash;40% of patients are reported to have developed complications such as fistulae, abscesses, perianal disease, ulcers or strictures which may require surgical resection, or may have developed colorectal cancer.[\\u003cspan additionalcitationids=\\\"CR11\\\" citationid=\\\"CR10\\\" class=\\\"CitationRef\\\"\\u003e10\\u003c/span\\u003e\\u0026ndash;\\u003cspan citationid=\\\"CR12\\\" class=\\\"CitationRef\\\"\\u003e12\\u003c/span\\u003e] Although, the mortality rate of CD is considered low, it is associated with complications and comorbidities, including malnutrition, post-operative complications, and a higher risk of colorectal cancer, which can, in turn, affect life expectancy.[\\u003cspan citationid=\\\"CR13\\\" class=\\\"CitationRef\\\"\\u003e13\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eIt is well established that CD can profoundly impact patients' lives,[\\u003cspan citationid=\\\"CR14\\\" class=\\\"CitationRef\\\"\\u003e14\\u003c/span\\u003e] yet few studies have identified the specific unmet needs of patients with CD, as research often focuses on the broader category of IBD.[\\u003cspan additionalcitationids=\\\"CR16\\\" citationid=\\\"CR15\\\" class=\\\"CitationRef\\\"\\u003e15\\u003c/span\\u003e\\u0026ndash;\\u003cspan citationid=\\\"CR17\\\" class=\\\"CitationRef\\\"\\u003e17\\u003c/span\\u003e] To the best of our knowledge, no study to date has employed a standardised needs-assessment method that allows for comparability across diseases and dimensions. Furthermore, a recent narrative review highlighted key unmet needs in the clinical evaluation and treatment of CD, emphasising the necessity for further research into other types of unmet needs.[\\u003cspan citationid=\\\"CR14\\\" class=\\\"CitationRef\\\"\\u003e14\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eUnderstanding which dimensions of patients\\u0026rsquo; lives are most affected and the resulting consequences is essential for identifying innovation gaps and, based on this, developing targeted strategies\\u0026mdash;whether pharmaceutical, social, or otherwise. More broadly, accurately measuring the full range of current unmet needs is crucial for transitioning towards a more needs-driven innovation approach. Using a standardised method to measure unmet needs allows for meaningful comparisons across different health conditions, which is vital for guiding effective healthcare prioritisation. This study aimed to investigate the unmet health-related needs of individuals living with Crohn\\u0026rsquo;s disease in Belgium by using a framework developed in the context of the Needs Examination, Evaluation and Dissemination (NEED) project, which allows comparisons across various diseases.[\\u003cspan citationid=\\\"CR18\\\" class=\\\"CitationRef\\\"\\u003e18\\u003c/span\\u003e]\\u003c/p\\u003e\"},{\"header\":\"2. Methods\",\"content\":\"\\u003cdiv id=\\\"Sec3\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003e2.1 Definitions\\u003c/h2\\u003e \\u003cp\\u003eThis study is based on the NEED framework, which distinguishes between health-related needs from a patient perspective and a societal perspective, each encompassing \\u003cem\\u003ehealthcare\\u003c/em\\u003e, \\u003cem\\u003ehealth\\u003c/em\\u003e, and \\u003cem\\u003esocial\\u003c/em\\u003e needs. [\\u003cspan citationid=\\\"CR18\\\" class=\\\"CitationRef\\\"\\u003e18\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eFrom the patient perspective, \\u003cem\\u003ehealthcare\\u003c/em\\u003e needs concern the needs for healthcare services in a broad sense, including medical treatments, contact with healthcare professionals, but also preventive measures, nursing care, etc.\\u003c/p\\u003e \\u003cp\\u003ePatient \\u003cem\\u003ehealth\\u003c/em\\u003e needs are defined as needs for better health (e.g. in case of illness, disability, or injury) and highlight the burden of the disease, including how much pain, suffering, reduction in wellbeing and quality of life the health condition is causing to patients despite current treatment.[\\u003cspan citationid=\\\"CR18\\\" class=\\\"CitationRef\\\"\\u003e18\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003e \\u003cem\\u003eSocial\\u003c/em\\u003e needs pertain to aspects of the socio-economic environment of patients, such as social life and work.\\u003c/p\\u003e \\u003cp\\u003eAn \\u003cem\\u003eunmet need\\u003c/em\\u003e is considered to arise when the available offer or supply of health-related interventions does not, or not completely, meet the existing needs.[\\u003cspan citationid=\\\"CR19\\\" class=\\\"CitationRef\\\"\\u003e19\\u003c/span\\u003e] The results presented in this article are based on the structure of this framework, focus specifically on the needs from the patient perspective (as opposed to the societal perspective), and are conveyed in a narrative format. The manuscript was written in accordance with the STROBE checklist.[\\u003cspan citationid=\\\"CR20\\\" class=\\\"CitationRef\\\"\\u003e20\\u003c/span\\u003e]\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec4\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003e2.2 Data collection\\u003c/h2\\u003e \\u003cp\\u003eA mixed-methods approach was used, which included an online patient survey and in-depth individual interviews with patients.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec5\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003e2.1 Survey\\u003c/h2\\u003e \\u003cp\\u003e \\u003cb\\u003eDevelopment of the online questionnaire\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eThe questionnaire used in the survey was an adaptation of a generic questionnaire previously developed to identify and assess patients\\u0026rsquo; needs across various health conditions.[\\u003cspan citationid=\\\"CR21\\\" class=\\\"CitationRef\\\"\\u003e21\\u003c/span\\u003e] This generic questionnaire was validated by a Delphi panel including representatives from umbrella patient organisations and sickness funds in Belgium. The response options concerning symptoms, treatment options, treatment side-effects, types of healthcare professionals, and services used were adapted to CD. Face validity of the questionnaire (in Dutch) was assessed by two gastro-enterologists specialised in IBD. Afterwards, the questionnaire was translated into French.\\u003c/p\\u003e \\u003cp\\u003e \\u003cb\\u003eRecruitment of participants\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eSurvey participants were recruited through the Belgian Health Care Knowledge Centre (KCE) website and social media platforms, and posters and flyers in healthcare settings. Information about the survey was also shared with sickness funds, disease-specific and umbrella patient organisations, hospitals, and universities, all of which relayed the information. The survey was available online from May 4 to July 2, 2023.\\u003c/p\\u003e \\u003cp\\u003eParticipants had to be at least 18 years old, having received a diagnosis of Crohn\\u0026rsquo;s Disease from a healthcare professional at least two months prior, and residing in Belgium. If a participant completed the survey on behalf of another adult who met these criteria but could not respond, they were required to answer as if the patient were responding.\\u003c/p\\u003e \\u003cp\\u003e \\u003cb\\u003eAnalysis of survey results\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eFor continuous variables, we calculated the mean and standard deviations (SD), while for categorical variables, we used percentages. Health-related quality of life (HRQoL) utility scores were assigned to respondents\\u0026rsquo; EQ-5D-5L health state descriptions using the most recent Belgian value set.[\\u003cspan citationid=\\\"CR22\\\" class=\\\"CitationRef\\\"\\u003e22\\u003c/span\\u003e] The EQ-5D-5L utility values were estimated before and after the onset of the disease. A paired-sample t-test was conducted to determine whether there was a significant difference between the mean utility scores before versus after the onset of the disease. Fisher\\u0026rsquo;s exact test was used to analyse categorical variables. The significance level was set at 0.05 for all statistical tests. All statistical analyses were performed using R version 4.3.0.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec6\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003e2.2 Interviews\\u003c/h2\\u003e \\u003cp\\u003e \\u003cb\\u003eDevelopment of the interview guide\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eThe interview guide was based on the generic tool developed in Maertens de Noordhout et al. (2022)[\\u003cspan citationid=\\\"CR21\\\" class=\\\"CitationRef\\\"\\u003e21\\u003c/span\\u003e], and adapted to CD. The interview guide was finalised in French and then translated into Dutch. The final interview guide covers: patient journeys leading to the diagnosis, symptomatic impact of the disease on patient\\u0026rsquo;s lives, treatment, encountered obstacles, information and support networks, relationships with the medical profession, and social relations.\\u003c/p\\u003e \\u003cp\\u003e \\u003cb\\u003eSelection of participants\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eInterview participants were chosen from survey respondents who expressed their willingness to participate. To ensure a diverse representation, the selection among volunteers was based on specific characteristics (native language, age, time since diagnosis, and treatment type).\\u003c/p\\u003e \\u003cp\\u003e \\u003cem\\u003eData collection process\\u003c/em\\u003e \\u003c/p\\u003e \\u003cp\\u003eInterviews were conducted via Teams\\u0026copy; in July and August 2023 by French or Dutch native-speaking researchers and were recorded and transcribed verbatim. To ensure confidentiality, all names of participants, institutions, and care providers were anonymized.\\u003c/p\\u003e \\u003cp\\u003e \\u003cb\\u003eAnalysis of interviews\\u003c/b\\u003e \\u003c/p\\u003e \\u003cp\\u003eQualitative thematic analysis was performed using NVIVO\\u0026reg; software. Native speakers coded the interviews, and two researchers collaborated to develop a shared nodes tree, which served as the structural foundation for reporting the research results.\\u003c/p\\u003e \\u003c/div\\u003e \\u003cdiv id=\\\"Sec7\\\" class=\\\"Section2\\\"\\u003e \\u003ch2\\u003e2.3 Ethics\\u003c/h2\\u003e \\u003cp\\u003e The study received approval from the ethics committee of the \\u0026lsquo;Erasmus Hospital Brussels\\u0026rsquo; (P2023/148/B4062023000088).\\u003c/p\\u003e \\u003c/div\\u003e\"},{\"header\":\"3. Results\",\"content\":\"\\u003cdiv id=\\\"Sec9\\\" class=\\\"Section2\\\"\\u003e\\n \\u003ch2\\u003e3.1 Participants\\u0026rsquo; characteristics\\u003c/h2\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eSurvey participants\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eOf the 258 individuals who initiated the survey, five were ineligible. Questionnaires missing mandatory responses were excluded (n\\u0026thinsp;=\\u0026thinsp;103). Consequently, the final dataset included 150 respondents, out of which 5% were proxies responding on behalf of a person affected by Crohn\\u0026rsquo;s who were unable to respond themselves (see Supplementary Fig.\\u0026nbsp;1).\\u003c/p\\u003e\\n \\u003cp\\u003eThe sample consisted of 72% women, the mean age was 43.4 years (SD: 13.7) and 57% of participants had a university degree (Table \\u003cspan class=\\\"InternalRef\\\"\\u003e1\\u003c/span\\u003e). The majority of participants (62%) were diagnosed more than ten years ago and around one quarter had undergone surgery due to CD.\\u003c/p\\u003e\\n \\u003ctable id=\\\"Tab1\\\" border=\\\"1\\\"\\u003e\\n \\u003ccaption language=\\\"En\\\"\\u003e\\n \\u003cdiv class=\\\"CaptionNumber\\\"\\u003eTable 1\\u003c/div\\u003e\\n \\u003cdiv class=\\\"CaptionContent\\\"\\u003e\\n \\u003cp\\u003eSurvey participants\\u0026rsquo; characteristics (n\\u0026thinsp;=\\u0026thinsp;150)\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003c/caption\\u003e\\n \\u003cthead\\u003e\\n \\u003ctr\\u003e\\n \\u003cth align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eVariable\\u003c/p\\u003e\\n \\u003c/th\\u003e\\n \\u003cth align=\\\"left\\\"\\u003e\\n \\u003cp\\u003en (%)\\u003c/p\\u003e\\n \\u003c/th\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/thead\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003ePerson affected by Crohn\\u0026rsquo;s\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eThemselves\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e142 (94.6)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eAnother adult\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e8 (5.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eGender\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eWoman\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e108 (72.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eMan\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e42 (28.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eLanguage\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eFrench\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e85 (56.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eDutch\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e65 (43.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eResidence region\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eWallonia\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e73 (48.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eFlanders\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e67 (44.6)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eBrussels\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e10 (6.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eAge group (in years)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e18\\u0026ndash;25\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e9 (6.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e25\\u0026ndash;44\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e74 (49.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e45\\u0026ndash;64\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e54 (36.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e65\\u0026ndash;74\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e9 (6.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ge;\\u0026thinsp;75\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e4 (2.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003ePaid work before diagnosis\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eYes\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e117 (78.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eOccupation just before diagnosis\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eEmployee\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e52 (34.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eWorker\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e36 (24.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eDisabled\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e2 (1.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eRetired\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eStudent\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e48 (32.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eSelf-employed\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e4 (2.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eUnemployed\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e3 (2.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eOther\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e5 (3.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eOccupation today\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eEmployee\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e54 (36.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eWorker\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e45 (30.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eDisabled\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e15 (10.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eRetired\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e14 (9.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eStudent\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e10 (6.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eSelf-employed\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e6 (4.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eUnemployed\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e2 (1.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eOther\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e8 (5.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eHighest level of education\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eSecondary education or less*\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e56 (37.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eUniversity degree**\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e86 (57.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eOther diploma***\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e8 (5.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eTime since diagnosis\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e2 to 6 months\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e6 (4.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e6 months to 2 years\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e15 (10.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e2 to 5 years\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e17 (11.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e5 to 10 years\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e19 (12.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eMore than 10 years\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e93 (62.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eSelf-reported treatment for CD\\u003csup\\u003e1\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003ePrescription drugs\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e139 (95.9)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNon-prescription drugs\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e18 (12.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNutrition support\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e34 (23.4)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eSurgical procedures\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e36 (24.8)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003ePhysiotherapy\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e25 (17.2)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eOthers\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e10 (6.9)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFlare-up status at time of survey\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eYes\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e28 (18.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNo\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e116 (77.3)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eI don\\u0026rsquo;t know\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e6 (4.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eNumber of comorbidities\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e1 to 2\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e51 (34.0)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e3 to 4\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e22 (14.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e5 or more\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e13 (8.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e\\u003cem\\u003eNone reported\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e64 (42.7)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e* No diploma or primary education, Lower secondary education, Upper secondary education;\\u003c/p\\u003e\\n \\u003cp\\u003e**Bachelor\\u0026apos;s, Master\\u0026apos;s, or Doctoral degree; *** Other diploma, Not sure.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003csup\\u003e1\\u003c/sup\\u003e Five respondents indicated \\u0026ldquo;No\\u0026rdquo; to the question if they are receiving or have received a treatment for CD and were therefore excluded from the denominator.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n \\u003c/table\\u003e\\n \\u003cp\\u003e\\u003cbr\\u003e\\u003c/p\\u003e\\n \\u003ctable id=\\\"Tab2\\\" border=\\\"1\\\"\\u003e\\n \\u003ccaption language=\\\"En\\\"\\u003e\\n \\u003cdiv class=\\\"CaptionNumber\\\"\\u003eTable 2\\u003c/div\\u003e\\n \\u003cdiv class=\\\"CaptionContent\\\"\\u003e\\n \\u003cp\\u003eUnmet health-related needs of survey participants\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003c/caption\\u003e\\n \\u003cthead\\u003e\\n \\u003ctr\\u003e\\n \\u003cth align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eUnmet need indicator\\u003c/p\\u003e\\n \\u003c/th\\u003e\\n \\u003cth align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e% of survey participants (n\\u0026thinsp;=\\u0026thinsp;150)\\u003c/p\\u003e\\n \\u003c/th\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003cth align=\\\"left\\\" colspan=\\\"3\\\"\\u003e\\n \\u003cp\\u003eUnmet healthcare need\\u003c/p\\u003e\\n \\u003c/th\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/thead\\u003e\\n \\u003ctbody\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eVery or quite burdensome treatment\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e17.9\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"3\\\"\\u003e\\n \\u003cp\\u003eVery or rather burdensome treatment side-effects (if\\u0026thinsp;\\u0026ge;\\u0026thinsp;10%)\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFatigue\\u0026nbsp;or\\u0026nbsp;exhaustion\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e64.1\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eWeight gain\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e28.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eSkin irritation or eczema\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e23.5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eDiarrhoea\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e19.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eNausea and/or vomiting\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e17.2\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eChange of external characteristics\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e14.5\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eInfection\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e11.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eReceived insufficient or no information\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e14.6\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eInformation provided was not very clear or not clear at all\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e8.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eWould have liked to be more involved in treatment choice\\u003csup\\u003e1\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e55.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eWaited more than one year between first consultation and CD diagnosis\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e19.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eDid not receive care when needed\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e13.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eUnmet health need\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eVery or rather burdensome physical symptom (if\\u0026thinsp;\\u0026ge;\\u0026thinsp;30%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eDiarrhoea\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e78.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFatigue or exhaustion\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e76.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eCramps\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e70.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eLack of energy\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e66.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eUrgency or stool urge\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e63.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eContinuous abdominal pain\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e48.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eJoint pain or inflammation\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e48.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eHeadache\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e37.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eNausea or vomiting\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e36.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eAnal pain\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e35.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eDry, painful or itchy skin or rash\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e30.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eVery or rather burdensome psychological symptom (if\\u0026thinsp;\\u0026ge;\\u0026thinsp;30%)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eStress\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e42.7\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFear or anxiety\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e37.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFeeling down, depressed, or sadness\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e37.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003eFeelings of restlessness, nervousness or irritability\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e35.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eUnmet social need\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eNeeded social support without receiving it\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e54.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eAfter \\u0026gt;\\u0026thinsp;30 day sick leave, reduced their working hours or did not return to work due to current state of health\\u003csup\\u003e2\\u003c/sup\\u003e\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e45.3\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003eImpacted financially by medical expenses\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\n \\u003cp\\u003e56.0\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003ctr\\u003e\\n \\u003ctd align=\\\"left\\\" colspan=\\\"2\\\"\\u003e\\n \\u003cp\\u003e\\u003csup\\u003e1\\u003c/sup\\u003e Denominator was n\\u0026thinsp;=\\u0026thinsp;94. \\u003csup\\u003e2\\u003c/sup\\u003eDeninator was n\\u0026thinsp;=\\u0026thinsp;64.\\u003c/p\\u003e\\n \\u003c/td\\u003e\\n \\u003ctd align=\\\"left\\\"\\u003e\\u0026nbsp;\\u003c/td\\u003e\\n \\u003c/tr\\u003e\\n \\u003c/tbody\\u003e\\n \\u003c/table\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eInterview participants\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eAs planned, 20 interviews were conducted. Among those interviewed, 60% were female, 75% had been diagnosed 10 or more years ago, and 40% had undergone surgery due to CD (see Supplementary Table\\u0026nbsp;1)\\u003c/p\\u003e\\n\\u003c/div\\u003e\\n\\u003cdiv id=\\\"Sec10\\\" class=\\\"Section2\\\"\\u003e\\n \\u003ch2\\u003e3.2 Unmet healthcare needs\\u003c/h2\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eDiagnostic timing\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eNearly half of respondents decided to seek medical attention within three months following the onset of symptoms. Once they decided to consult, 50% were able to find medical attention within a month. Almost 60% received the diagnosis within two months of their first consultation, but 19% waited over a year for a diagnosis.\\u003c/p\\u003e\\n \\u003cp\\u003eDuring the interviews, patients explained that the non-specific nature of their symptoms initially led to differential diagnoses focusing on common gastrointestinal issues like irritable bowel syndrome or viral gastroenteritis. Combined with general practitioners\\u0026apos; lack of familiarity with Crohn\\u0026rsquo;s disease, these delays sometimes resulted in frustration and feelings that their condition was not adequately investigated. Some participants only received the correct diagnosis once they were referred to a university hospital. Certain patient characteristics (e.g., being a healthcare professional, having a relative who is a doctor, participating in clinical trials) were reported to speed up the diagnostic process by facilitating quicker access to medical appointments.\\u003c/p\\u003e\\n \\u003cp\\u003eStudy participants also reflected on the compartmentalization of medical specializations, noting that doctors sometimes focused narrowly on their own domain, delaying the recognition of broader systemic issues. The high number and the invasiveness of diagnostic procedures (ultrasound, biopsy, blood tests, stool analysis, gastroscopy, colonoscopy, and entero-MRI) were perceived by patients as lengthy and burdensome.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;We fiddled a little bit with the diagnosis, I have to admit that... I even went as far as [Name of University Hospital] in an ambulance to see a specialist at the time, to confirm the disease. I remember being hospitalized for a long time, I think I stayed in the hospital for a month and a half, on an empty stomach, with a central channel \\u0026ndash; which had to be changed twice by the way [\\u0026hellip;].\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eAccessibility of care\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eThirteen percent of participants mentioned that they did not receive care when they needed it. The most common reported reasons for foregone care were the long waiting times to get an appointment (5%), the lack of competent staff (5%), and the lack of information (4%). During the interviews, patients also highlighted geographic barriers to receiving the needed care.\\u003c/p\\u003e\\n \\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\n \\u003cp\\u003eEspecially if you want to go to specialised care, in my case you have to bridge a certain distance, [region-region]. Indeed, that is not next-door.\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eEffectiveness of treatment\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eOne of the most important unmet healthcare needs expressed during the interviews was the need for improved treatment or management of gastrointestinal symptoms, which profoundly impacted patients\\u0026rsquo; HRQoL, their psychological well-being, and social life. While surgical treatments were often deemed effective, patients noted the difficulty of finding a lasting pharmaceutical solution, as effectiveness was frequently temporary, requiring new trials over time. They also found drastic diets unsustainable long-term due to their restrictive nature and social challenges, with no clear dietary guidelines available, leading to a reliance on personal trial and error.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;Since I\\u0026apos;ve had surgery and I\\u0026apos;ve been on treatment, we\\u0026apos;ve finally found the right treatment because I\\u0026apos;ve been on five different treatments. I\\u0026apos;m on the fifth I think now, I have absolutely nothing left.\\u0026quot;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;No, it really didn\\u0026apos;t work, so we changed. Then I took another molecule [\\u0026hellip;]. It didn\\u0026apos;t work either. I think that after a year I was already unresponsive and here I am [\\u0026hellip;] it\\u0026apos;s been a month and a half that I\\u0026apos;m really not well [...] so I\\u0026apos;m at the stage where I\\u0026apos;m wondering if it\\u0026apos;s still worth taking a treatment.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eExperienced burden of treatment and its side-effects\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eOver 85% of participants expressed being \\u0026ldquo;very satisfied\\u0026rdquo; or \\u0026ldquo;satisfied\\u0026rdquo; with their treatment, despite 17.9% finding it very or rather burdensome. The primary reason for this burden was side-effects (84.6%).\\u003c/p\\u003e\\n \\u003cp\\u003eDuring the interviews, participants reported that treatments imposed constraints on their lives, activities, and access to care, due to being time-consuming or complex, requiring significant self-discipline, regular hospital visits and routine investigations (e.g., blood tests), or their practical considerations such as necessitating refrigerator storing. Maintaining long-term treatment discipline was particularly difficult without close clinician follow-up.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;It\\u0026apos;s not just Crohn\\u0026apos;s, there are the operations, there are the effects of the operations, it plays a psychological role because we\\u0026apos;re not prepared to go back and forth to the hospital. We were promised that the bag would be the miracle solution, and it\\u0026apos;s true that I had regained quality of life in terms of trips to the toilet and the pain, but I had other things in return.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eThe side-effects of treatment that were most frequently reported as very or rather burdensome were fatigue or exhaustion (64.1%), weight gain (28.3%), skin irritation or eczema (23.5%), and diarrhoea (19.3%). However, it was often unclear whether diarrhoea and fatigue were symptoms of the disease or side effects of the treatment. Patients mentioned that the constraints of medication sometimes led them to question whether continuing treatment was worth it. Some expressed a desire to stop taking the drugs due to severe side effects or as a personal goal, not wanting lifelong dependence on medication. Side effects from surgery, such as changes in abdominal appearance, were also noted as challenging to cope with daily.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;Yes, I also have that as an additional side-effect of taking that medication. So it is not Crohn\\u0026apos;s-related, but medication-related that I have skin cancer. [\\u0026hellip;] According to the dermatologist, the major cause is [name immunomodulator A].\\u0026ldquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;I was nauseous all the time, nothing was going through [...] I had loss of appetite. I\\u0026apos;m going to say, I was making myself food, I was like, \\u0026quot;oh, that looks great\\u0026quot;, and then when I got to the front of the dish, it was impossible to eat.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eQuality of care\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eOver 75% of patients were satisfied with their healthcare providers. The main areas of dissatisfaction with healthcare mentioned in the interviews were the limited availability of specialists and nurses causing rushed consultations, the fact that rotation between senior and junior staff affected continuity of care, and the perceived lack of competence in some physicians. The latter was evidenced by post-operative complications, inappropriate medication dosages, or a general lack of professionalism. Patients criticized the lack of a holistic approach, the dehumanization of care making them feel \\u0026ldquo;like a number\\u0026rdquo;, and its over-specialization leading to fragmented care. Navigating through different medical specializations was challenging for some, despite recognizing the benefits of a multidisciplinary approach. Participants emphasized the useful inclusion of other team members in the care continuum such as nurses and social workers. Better guidance and structured care pathways were suggested, similar to pathways for diabetes or renal failure. In addition, there was an expressed need for psychological support alongside pharmacological treatment and medical procedures.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026ldquo;It goes well as long as you can keep seeing the same doctor, who knows your trajectory, who already has experience that you react or don\\u0026apos;t react to things in a particular way and who doesn\\u0026apos;t want to reinvent the wheel every time. In the University [hospital] it\\u0026apos;s the assistants. And every time different assistants, assistants who don\\u0026apos;t know my file. [...] And then it happens again. \\u0026apos;In the future, ma\\u0026apos;am, you will have to tell them yourself that they should put [name artificial tears] in your eyes. And then I\\u0026apos;m like, okay, the responsibility is being placed on me again.\\u0026ldquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;So you see, we feel that the medical system is under pressure, we feel that visits with the surgeon are 5 minutes, quick quick, we talk but there is no examination, there is really nothing in the end.\\u0026quot;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eInformation\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eAround 15% of participants reported that they received insufficient or no information, and 9% reported that information provided was not very clear or not clear at all. During the interviews, the reasons for dissatisfaction with the information received included a lack of proactivity from healthcare professionals, insufficient guidance on which specialists to consult, and the fact that information was shared too quickly and was sometimes difficult to understand. The importance of how doctors communicated the diagnosis was also highlighted, with key factors being compassion, frankness, and time devoted to explaining the disease and its consequences.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;Oh no, no, my doctor, uh... I\\u0026apos;m telling you, sometimes I\\u0026apos;m the one who has to ask for a vaccination: \\u0026quot;Do you think I should get vaccinated, Doctor?\\u0026quot; So \\u0026quot;yes, obviously you have to get vaccinated, because you have low immunity.\\u0026quot; \\u0026quot;Oh well, thank you for telling me!\\u0026quot; \\u0026quot;Do I have to go see the dermatologist Doctor?\\u0026quot;, \\u0026quot;Oh yes yes, of course you...\\u0026quot;. But frankly no, it\\u0026apos;s not through my doctor that I found the info, no, it\\u0026apos;s me.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eFurthermore, 28% of survey participants expressed a desire to be more involved in decisions regarding their treatment. During the interviews, some patients reported having been informed and having the final say in treatment choices, while others felt they were expected to follow directives. Patients trusted their doctors\\u0026apos; expertise but sometimes hesitated whether to challenge their recommendations or felt their input was not heard, influenced by a fear of contradicting the doctor\\u0026apos;s authority.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;At one point he told me \\u0026apos;you absolutely have to take corticosteroids again\\u0026apos;, I said \\u0026apos;no, I don\\u0026apos;t want to\\u0026apos;. So basically we made a deal (laughs), ... It\\u0026apos;s laughable but that\\u0026apos;s the way it is.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;The contrast is evident again between [hospital], for example, when you say okay, we\\u0026apos;re going to start with this, and it\\u0026apos;s like okay, this is it. While in [region], they literally had brochures, you name it, those and those options, that you can choose from: that, that, that or that. So you did indeed have much more say, much more control. As it were, patients had the last word in [region].\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003c/div\\u003e\\n\\u003cdiv id=\\\"Sec11\\\" class=\\\"Section2\\\"\\u003e\\n \\u003ch2\\u003e3.3 Unmet health needs\\u003c/h2\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eImpact on general health-related quality of life (HRQoL)\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eThe EQ-5D-5L utility score showed a significant decrease from 0.85 (95% confidence interval [CI]: 0.82; 0.88) before disease onset to 0.70 (95% CI: 0.67; 0.74) at the time of the survey (mean difference \\u0026minus;\\u0026thinsp;0.15; 95% CI: -0.20; -0.10; p\\u0026thinsp;\\u0026lt;\\u0026thinsp;0.0001), indicating a reduction in HRQoL related to the disease.\\u003c/p\\u003e\\n \\u003cp\\u003eCrohn\\u0026rsquo;s disease led to an increase in the proportion of slight, moderate and severe health problems in all EQ-5D-5L dimensions (Fig.\\u0026nbsp;\\u003cspan class=\\\"InternalRef\\\"\\u003e1\\u003c/span\\u003e). The most important increases were in difficulties performing usual activities (+\\u0026thinsp;55.3% points), pain/discomfort (+\\u0026thinsp;46.0% points), mobility (+\\u0026thinsp;34.7% points), and anxiety/depression (+\\u0026thinsp;30.0% points), compared to a smaller rise in the self-care dimension (+\\u0026thinsp;10.6% points).\\u003c/p\\u003e\\n \\u003cp\\u003eThe highest increase in number of individuals reporting severe problems concerned the ability to carry out usual activities (+\\u0026thinsp;9.4% points) and anxiety/depression (+\\u0026thinsp;4% points). Few participants reported extreme problems across any EQ-5D-5L dimensions.\\u003c/p\\u003e\\n \\u003cp\\u003eInterviewees highlighted their emotional and sexual life as another dimension negatively impacted by the disease, and which could occasionally lead to the deliberate choice not to have children.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;For example, sexually as well. So if you sleep somewhere else now, because you have no control over your anus, in my case, and you go to sleep somewhere, or with someone, or in a hotel or whatever. So, in your head, knowing that you are not at home, if you encounter that at home, it\\u0026apos;s not a problem, you clean it up and it\\u0026apos;s... That you try to cover up. That\\u0026apos;s not easy. Sexually, it\\u0026apos;s the same thing. It\\u0026apos;s not... so logical for someone who suddenly loses their bowel movements, that\\u0026apos;s not... You can\\u0026apos;t just flip a switch, and that\\u0026apos;s not easy. And if you do enter into new relationships, how do you explain it?\\u0026quot;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eImpact on physical health\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eThe physical symptoms that were reported as very or rather burdensome by the highest number of participants were diarrhea (78.0%), fatigue or exhaustion (76.0%), and abdominal cramps (70.0%) (Table\\u0026nbsp;3). Interviewed patients described burdensome consequences of the physical symptoms, including a permanent state of weakness which required more rest thereby impacting daily activities (e.g. driving).\\u003c/p\\u003e\\n \\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\n \\u003cp\\u003eBeen home for a week, and I found the fatigue very heavy, I would always sleep and sleep and at one point I said, I have to get over it.\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eImpact on psychological health\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eThe psychological symptoms that were reported as very or rather burdensome by the highest number of participants were stress (42.7%), fear or anxiety (37.3%), and feeling down, depressed or sad (37.3%) (Table\\u0026nbsp;3). The interviewees mentioned that the invisibility of the disease affected them psychologically. One cause of stress was the fear of the condition progressing over time. While treatment ineffectiveness caused hopelessness in patients, the physical symptoms, like uncontrolled bowel movements, caused embarrassing and socially awkward situations with a significant psychological impact.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;Physically, it\\u0026apos;s not visible when we\\u0026apos;re not feeling well, so it\\u0026apos;s not like having a broken arm or a cast on your foot, people don\\u0026apos;t see it and so it\\u0026apos;s like \\u0026apos;stop complaining\\u0026apos;. We\\u0026apos;re in pain, we turn white because of the pain, but people don\\u0026apos;t realize it. So no, the people around us don\\u0026apos;t understand.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;I went for a walk, I had just eaten, and now, fortunately, it was in the woods but [...] Then a little accident and then psychologically, well, I wasn\\u0026apos;t ready. And it\\u0026apos;s silly because we tell ourselves it can happen to anyone in fact but, yes it still has a psychological impact.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003c/div\\u003e\\n\\u003cdiv id=\\\"Sec12\\\" class=\\\"Section2\\\"\\u003e\\n \\u003ch2\\u003e3.4 Unmet social needs\\u003c/h2\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eImpact on social life\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eA bit more than half of respondents (54%) reported needing social support in at least one area without receiving it. The most frequently reported unmet social support needs included talking to other patients about the disease (23.6%), administrative or social support (20.1%), more help with day-to-day activities (16.9%), and talking about things other than health problems (16.2%).\\u003c/p\\u003e\\n \\u003cp\\u003eInterviewed patients mentioned that they had to change their social and leisure activities, such as sports and travelling, to take into account the implications of their disease (lacking energy, medicine transportation issues, severity of symptoms). They often hesitated or refused social activities to avoid embarrassing situations due to insufficient access to toilets. This, they explained, lead to isolation and withdrawal from family life and social interactions. Changes in physical appearance due to the illness itself or due to its treatment also increased the desire to avoid social activities.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;Sometimes we\\u0026apos;re afraid to go to people\\u0026apos;s houses, for example to sleep in people\\u0026apos;s homes, I don\\u0026apos;t dare to sleep too much. Because sometimes the consequences are a little embarrassing, but if after a while, to have said I don\\u0026apos;t do all this, you end up getting used to it and you live well with it.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\n \\u003cp\\u003eI\\u0026apos;ve already said that to my partner, I would really like to do yoga, but I sometimes don\\u0026apos;t dare because I think, suppose I have gas in the intestine or air in the intestines and that flies out unwillingly, because that happens sometimes, then it\\u0026apos;s not so nice.\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003cp\\u003eSupport from loved ones was considered crucial, especially during medical appointments or severe flare-ups. Importance was given to empathy, help with daily tasks, and ensuring access to toilets.\\u003c/p\\u003e\\n \\u003cp\\u003eSome study participants considered relationships with other Crohn\\u0026apos;s Disease patients beneficial for exchanging experiences and finding encouragement. For them, patient support groups provided valuable information and interaction opportunities. However, other participants found these interactions counterproductive due to frequent negativity and misinformation and preferred not to be reminded of their illness.\\u003c/p\\u003e\\n \\u003cp\\u003eAnother challenge that was raised by interviewees concerned the administrative hurdles associated with the disease. In Belgium, obtaining reimbursement for certain drugs required annual application renewal, causing stress and potential treatment interruptions. The process involved multiple administrative steps and communication channels, leading to delays and frustration. This meant that patients spent significant time on administrative tasks, impacting their professional and personal lives. Pharmacists were identified as precious in assisting with navigating the administrative procedures and ensuring medication availability.\\u003c/p\\u003e\\n \\u003cdiv class=\\\"BlockQuote\\\"\\u003e\\n \\u003cp\\u003eFortunately, I have a good partner who supports me enormously in this and is very understanding in that area. That makes a difference. For example, he will do the cleaning and cooking. He\\u0026apos;s going to take a lot off your hands. The moments when I have to lie down on the couch or sleep longer or something, for example, he actually takes on a lot.\\u003c/p\\u003e\\n \\u003cp\\u003eI say it, the people at the hospital themselves who give a lot of support, also know that there is an association where you can always ask questions or meet fellows. The fact that you are not alone. I am well surrounded. I have a lot of people who understand me and are going to assist me.\\u003c/p\\u003e\\n \\u003c/div\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eImpact on work\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eTwo thirds (68.8%) of respondents who were employed at the time of their diagnosis had to interrupt their work for at least one month. Among these, 28.1% ended up reducing their work hours and 17.2% did not return to work due their disease.\\u003c/p\\u003e\\n \\u003cp\\u003eInterviewed patients explained that Crohn\\u0026apos;s led to work absenteeism due to various reasons, including flare-ups, poor general health, medical appointments, and hospitalisations. Repeated absences and productivity loss caused guilt, and feelings of injustice due to criticism or disciplinary actions. In addition, access to toilets at work, especially in certain jobs, was a significant issue. Despite these constraints, many patients wanted to continue working as if they were not ill.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;That is to say, I will have to consider a 4/5ths because I accept the fact that I will never be able to work full-time again, that I have to preserve my health. But that means that again for my pension, for etc., well... I will have done a part-time job, even though I would like nothing better than to work full-time.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cstrong\\u003eFinancial consequences of disease\\u003c/strong\\u003e\\u003c/p\\u003e\\n \\u003cp\\u003eFifty-six percent of participants reported experiencing a financial impact due to medical costs. Interviewees also mentioned being financially affected by the accumulation of many small non-healthcare expenses, such as parking fees, household help, toilet access fees, and nappies during flare-ups. Some investigations or treatments (e.g. probiotics, vitamins, food supplements) were minimally reimbursed or not reimbursed at all. Frustration was expressed concerning private life insurance premiums increasing because of Crohn\\u0026rsquo;s or even excluding them from coverage.\\u003c/p\\u003e\\n \\u003cp\\u003e\\u003cem\\u003e\\u0026quot;Magnesium, calcium when I was taking cortisone etc., well all that, it\\u0026apos;s still quite expensive, probiotics etc. Well these are things that you have to take as a supplement in the end, but uh... So all this is not reimbursed, but on the other hand all the medical appointments related to the disease, so all the blood tests, additional analyses, the little that is still at our expense is still reimbursed by the mutual insurance company. But here\\u0026apos;s the thing, not everything that\\u0026apos;s a treatment add-on is reimbursed. And so sometimes I get it for [\\u0026hellip;] Yes, 150\\u0026euro; per month some months.\\u0026rdquo;\\u003c/em\\u003e\\u003c/p\\u003e\\n\\u003c/div\\u003e\"},{\"header\":\"4. Discussion\",\"content\":\"\\u003cp\\u003e The patient survey and interviews provided an in-depth insight into the perceived unmet health-related needs of people with Crohn\\u0026rsquo;s Disease in Belgium. The disease had a substantial impact on individuals\\u0026rsquo; health-related quality of life. The most burdensome physical symptoms were diarrhoea, fatigue, and abdominal cramps, while stress, anxiety, and depression were the leading psychological challenges. The invisibility of Crohn\\u0026rsquo;s sometimes led to feelings of illegitimacy, where patients felt misunderstood by family, employers, and colleagues.\\u003c/p\\u003e \\u003cp\\u003eUnmet healthcare needs mainly concerned diagnostic delays, the lack of effective treatment, high treatment burden, and the lack of psychological support. The diagnostic process was lengthy and burdensome for many, with nearly 1 in 5 participants waiting over a year for a diagnosis. This was attributed to insufficient awareness among GPs, the need for invasive investigations, long waiting times for medical imaging, and the compartmentalisation of medical specialisation(s). One in six patients found their treatment burdensome primarily due to side-effects like fatigue, weight gain, and skin problems.\\u003c/p\\u003e \\u003cp\\u003eSurvey participants highlighted that Crohn\\u0026rsquo;s also had a significant impact on their social life, requiring adaptations in their diet, leisure activities, sexual life, and social habits. These changes were primarily driven by the severity of symptoms and by the fear of experiencing socially embarrassing situations. Almost half the working individuals with Crohn\\u0026rsquo;s had to reduce work or had stopped working due to their illness. A financial impact of the disease was reported by more than half of the survey participants, attributed to loss of income due to the reduced working ability, medical expenses, and non-healthcare costs. Thirteen percent of Crohn\\u0026rsquo;s patients also reported not having received social support when they had needed it, which included particularly administrative support.\\u003c/p\\u003e \\u003cp\\u003eSome of the unmet health-related needs identified in this study for individuals living with CD in Belgium were also identified in other studies. The impact of the disease on psychological health and the lack of psychological support was highlighted in two previous studies.[\\u003cspan citationid=\\\"CR23\\\" class=\\\"CitationRef\\\"\\u003e23\\u003c/span\\u003e, \\u003cspan citationid=\\\"CR24\\\" class=\\\"CitationRef\\\"\\u003e24\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eRegarding unmet healthcare needs, other studies also noted the need for improved treatment of gastro-intestinal symptoms, because of their high impact on HRQoL and well-being, and expressed concerns regarding the safety and long-term effects of treatment.[\\u003cspan citationid=\\\"CR15\\\" class=\\\"CitationRef\\\"\\u003e15\\u003c/span\\u003e] In the IBD2020 survey, which covers eight European countries, communication with healthcare providers was identified by patients with CD and ulcerative colitis as one the most important drivers of care quality.[\\u003cspan citationid=\\\"CR25\\\" class=\\\"CitationRef\\\"\\u003e25\\u003c/span\\u003e] Scheurlen et al. (2023) reported that pharmacological and surgical treatment complications and treatment failure emphasized the need for research on standardised clinical approaches, reliable biomarkers, new treatment agents, and addressing diverse clinical manifestations.[\\u003cspan citationid=\\\"CR14\\\" class=\\\"CitationRef\\\"\\u003e14\\u003c/span\\u003e]\\u003c/p\\u003e \\u003cp\\u003eRegarding the unmet social needs, a European survey (2010\\u0026ndash;2011) showed that 40% of individuals with IBD had made adjustments in their working lives (e.g. flexible hours, part-time), 25% were absent from work for more than 25 days, and 31% even lost or quit their job due to their disease, which posed financial burdens on patients and their families.[\\u003cspan citationid=\\\"CR26\\\" class=\\\"CitationRef\\\"\\u003e26\\u003c/span\\u003e] This compares with 69% in our survey of working individuals who interrupted their work for at least 30 days, and out of these, 28% returning to work with reduced working schedule and 17% not returning to work at all. Because in our survey this question was asked only to those individuals who had interrupted work as a consequence of the disease, we do not have the percentages for the whole sample.\\u003c/p\\u003e \\u003cp\\u003eThis study uses a comprehensive patient-centered approach to provide evidence on the unmet health-related needs of individuals with CD. This evidence can help to develop patient relevant outcome measures and should be incorporated in the decision-making processes of various healthcare stakeholders, including policymakers, researchers and the industry, to foster to a more needs-driven healthcare innovation and policy system for individuals living with CD.\\u003c/p\\u003e \\u003cp\\u003eDespite its contributions, there are some methodological considerations that must be taken into account for the interpretability of the study. The recruitment through patient organisations, medical professionals and hospitals might have excluded individuals at the margins of healthcare (e.g. lacking access to healthcare or infrequently followed-up). While these individuals might be few, their unmet needs are likely more significant. The online survey method might have excluded vulnerable populations lacking internet access or technological skills, as reflected by the overall high education level of participants. Administering the survey online was a way of collecting data in a timely manner while allowing to include a large proportion of the patient population, however this choice might have led to an underestimation of the unmet needs of the population of individuals living with CD.\\u003c/p\\u003e \\u003cp\\u003eThe fact that many respondents initiated the survey but subsequently closed it (103 out of 253) may indicate that those who eventually participated were different to those who didn\\u0026rsquo;t (e.g. had more time available, or more severe symptoms increasing their motivation to participate). However, because we have no data on non-participants we cannot draw any conclusions. Concerning the selection of interviewees, it was not possible to achieve a perfect representation of the full spectrum of all combinations of patient characteristics, which may have resulted in the omission of the specific needs of particular profiles. Furthermore, the unmet needs relating to past events (e.g. diagnosis) might be outdated due to changes in healthcare organisation.\\u003c/p\\u003e \\u003cp\\u003eThe exclusion of participants under the age of 18 was deliberate because the current questionnaire is not adapted for younger individuals. Future studies focusing on the health, healthcare, and social unmet needs of children and adolescents with Crohn\\u0026rsquo;s would be a vital complementary study.\\u003c/p\\u003e\"},{\"header\":\"5. Conclusions\",\"content\":\"\\u003cp\\u003eThis study shows that individuals with CD have important unmet needs beyond the more commonly known \\u0026lsquo;unmet medical needs\\u0026rsquo;. Despite improvements in diagnostic accuracy and more surgery-sparing treatments, CD remains a life-long, early-onset illness with a significant impact on quality of life, including sexual life, social life and working ability. Significant delays in diagnosis were observed, as well as insufficient psychological support. Incidence is expected to rise, and the disease remains unpreventable, insufficiently treated, and individuals insufficiently supported. The findings of this study may assist health policymakers, regulators, HTA bodies, payers, researchers and the pharmaceutical industry in taking into account the unmet health-related needs of patients in their decision-making processes.\\u003c/p\\u003e\"},{\"header\":\"Declarations\",\"content\":\"\\u003ch2\\u003eEthics approval and consent to participate\\u003c/h2\\u003e\\n\\u003cp\\u003eAll study participants provided written informed consent. The study received approval from the ethics committee of the \\u0026lsquo;Erasmus Hospital Brussels\\u0026rsquo; (P2023/148/B4062023000088).\\u003c/p\\u003e\\n\\u003ch2\\u003eConsent for publication\\u003c/h2\\u003e\\n\\u003cp\\u003eNot applicable.\\u003c/p\\u003e\\n\\u003ch2\\u003eAvailability of data and materials\\u003c/h2\\u003e\\n\\u003cp\\u003eThe data supporting the results presented in this article can be found in the supplementary material, as well as in the publicly available NEED database: https://healthinformation.sciensano.be/shiny/NEED/\\u003csup\\u003e\\u0026nbsp;\\u003c/sup\\u003e\\u003csup\\u003e[27]\\u003c/sup\\u003e\\u003c/p\\u003e\\n\\u003ch2\\u003eCompeting interests\\u003c/h2\\u003e\\n\\u003cp\\u003eThe authors declare that they have no competing interests.\\u003c/p\\u003e\\n\\u003ch2\\u003eFunding\\u003c/h2\\u003e\\n\\u003cp\\u003eThis work was supported by the Belgian Health Care Knowledge Centre and the Belgian Science Policy (grant RT/23/NEED).\\u003c/p\\u003e\\n\\u003ch2\\u003eAuthors\\u0026apos; contributions\\u003c/h2\\u003e\\n\\u003cp\\u003eML: study design, data analysis, writing up of the first draft of the paper; CS: study design, data analysis, writing up of the first draft of the paper; MDJ: study design, data analysis, reviewing the article; RG: patient recruitment, data collection, data analysis, reviewing the article; UL: data analysis, reviewing the article; RC: data analysis, reviewing the article; RDP: study design, data analysis, reviewing the article; LK: study design, data analysis, reviewing the articles; IC: study design, data analysis, reviewing the article; CMdN: study design, data analysis, writing up of the first draft of the paper.\\u0026nbsp;\\u003c/p\\u003e\\n\\u003ch2\\u003eAcknowledgements\\u003c/h2\\u003e\\n\\u003cp\\u003eWe would like to thank Jonas Dobbelaere, Tessa van Montfort, Yan Zhi Tan for analysis. Thank you to Peter Buydens, Peter Bossuyt, Sophie Vieujean and Severine Vermeire for their clinical expertise. We would also like to acknowledge the patient associations and healthcare providers for helping distribute the survey, and Sabine Corachan and Nathalie Swartenbroekx for the project management. A special thank you to all participants in the study.\\u003c/p\\u003e\"},{\"header\":\"References\",\"content\":\"\\u003col\\u003e\\n\\u003cli\\u003eZhao M, Gonczi L, Lakatos PL, Burisch J. The Burden of Inflammatory Bowel Disease in Europe in 2020. J Crohns Colitis. 2021 Sep 25;15(9):1573-87.\\u003c/li\\u003e\\n\\u003cli\\u003eWang R, Li Z, Liu S, Zhang D. Global, regional and national burden of inflammatory bowel disease in 204 countries and territories from 1990 to 2019: a systematic analysis based on the Global Burden of Disease Study 2019. BMJ Open. 2023 Mar 28;13(3):e065186.\\u003c/li\\u003e\\n\\u003cli\\u003eAbraham BP, Mehta S, El-Serag HB. Natural history of pediatric-onset inflammatory bowel disease: a systematic review. J Clin Gastroenterol. 2012 Aug;46(7):581-9.\\u003c/li\\u003e\\n\\u003cli\\u003eFeuerstein JD, Cheifetz AS. Crohn Disease: Epidemiology, Diagnosis, and Management. Mayo Clin Proc. 2017 Jul;92(7):1088-103.\\u003c/li\\u003e\\n\\u003cli\\u003eCushing K, Higgins PDR. Management of Crohn Disease: A Review. Jama. 2021 Jan 5;325(1):69-80.\\u003c/li\\u003e\\n\\u003cli\\u003eBaumgart DC, Carding SR. Inflammatory bowel disease: cause and immunobiology. Lancet. 2007 May 12;369(9573):1627-40.\\u003c/li\\u003e\\n\\u003cli\\u003eCarriere J, Darfeuille-Michaud A, Nguyen HT. Infectious etiopathogenesis of Crohn\\u0026apos;s disease. World J Gastroenterol. 2014 Sep 14;20(34):12102-17.\\u003c/li\\u003e\\n\\u003cli\\u003eGuan Q. A Comprehensive Review and Update on the Pathogenesis of Inflammatory Bowel Disease. J Immunol Res. 2019;2019:7247238.\\u003c/li\\u003e\\n\\u003cli\\u003eTurner D, Ricciuto A, Lewis A, D\\u0026apos;Amico F, Dhaliwal J, Griffiths AM, et al. STRIDE-II: An Update on the Selecting Therapeutic Targets in Inflammatory Bowel Disease (STRIDE) Initiative of the International Organization for the Study of IBD (IOIBD): Determining Therapeutic Goals for Treat-to-Target strategies in IBD. Gastroenterology. 2021 Apr;160(5):1570-83.\\u003c/li\\u003e\\n\\u003cli\\u003eBurisch J, Jess T, Martinato M, Lakatos PL, EpiCom E. The burden of inflammatory bowel disease in Europe. J Crohns Colitis. 2013 May;7(4):322-37.\\u003c/li\\u003e\\n\\u003cli\\u003eVavricka SR, Schoepfer A, Scharl M, Lakatos PL, Navarini A, Rogler G. Extraintestinal Manifestations of Inflammatory Bowel Disease. Inflamm Bowel Dis. 2015 Aug;21(8):1982-92.\\u003c/li\\u003e\\n\\u003cli\\u003eJess T, Gamborg M, Matzen P, Munkholm P, S\\u0026oslash;rensen TI. Increased risk of intestinal cancer in Crohn\\u0026apos;s disease: a meta-analysis of population-based cohort studies. Am J Gastroenterol. 2005 Dec;100(12):2724-9.\\u003c/li\\u003e\\n\\u003cli\\u003eBewtra M, Kaiser LM, TenHave T, Lewis JD. Crohn\\u0026apos;s disease and ulcerative colitis are associated with elevated standardized mortality ratios: a meta-analysis. Inflamm Bowel Dis. 2013 Mar;19(3):599-613.\\u003c/li\\u003e\\n\\u003cli\\u003eScheurlen KM, Parks MA, Macleod A, Galandiuk S. Unmet Challenges in Patients with Crohn\\u0026rsquo;s Disease. Journal of Clinical Medicine. 2023;12(17):5595.\\u003c/li\\u003e\\n\\u003cli\\u003eSchoefs E, Vermeire S, Ferrante M, Sabino J, Lambrechts T, Avedano L, et al. What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease? A qualitative patient preference study. J Crohns Colitis. 2022 Sep 27.\\u003c/li\\u003e\\n\\u003cli\\u003eRev\\u0026eacute;s J, Ungaro RC, Torres J. Unmet needs in inflammatory bowel disease. Current Research in Pharmacology and Drug Discovery. 2021 2021/01/01/;2:100070.\\u003c/li\\u003e\\n\\u003cli\\u003eIrvine EJ. Patients\\u0026apos; fears and unmet needs in inflammatory bowel disease. Alimentary Pharmacology \\u0026amp; Therapeutics. 2004;20(s4):54-9.\\u003c/li\\u003e\\n\\u003cli\\u003eMaertens de Noordhout C, Levy M, Claerman R, De Jaeger M, De Pauw R, Kohn L, et al. Needs Examination, Evaluation and Dissemination (NEED): assessment framework. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge Center (KCE); 2024 03/2024. Report No.: 377C1.\\u003c/li\\u003e\\n\\u003cli\\u003eIncerti D, Borowne J, Baker CL, Makinson G, Goren A, Willke R, et al. An empirical tool for estimating the share of unmet need due to healthcare inefficiencies, suboptimal access, and lack of effective technologies. BMC Health Serv Res. 2019;19(113).\\u003c/li\\u003e\\n\\u003cli\\u003evon Elm E, Altman DG, Egger M, Pocock SJ, G\\u0026oslash;tzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. Lancet. 2007 Oct 20;370(9596):1453-7.\\u003c/li\\u003e\\n\\u003cli\\u003eMaertens de Noordhout C, Detollenaere J, Primus-de Jong C, Kohn L, Devleesschauwer B, Charafeddine R, et al. Identifying Patient needs in Belgium: methodological approach and application. Health Services Research (HSR). Brussels: Belgian Health Care Knowledge Centre (KCE); 2022. Report No.: 348.\\u003c/li\\u003e\\n\\u003cli\\u003eBouckaert N, Cleemput I, Devriese S, Gerkens S. An EQ-5D-5L Value Set for Belgium. Pharmacoecon Open. 2022 Nov;6(6):823-36.\\u003c/li\\u003e\\n\\u003cli\\u003eSchoefs E, Vermeire S, Ferrante M, Sabino J, Lambrechts T, Avedano L, et al. What are the unmet needs and most relevant treatment outcomes according to patients with inflammatory bowel disease? A qualitative patient preference study. J Crohns Colitis. 2022:jjac145.\\u003c/li\\u003e\\n\\u003cli\\u003eNeuendorf R, Harding A, Stello N, Hanes D, Wahbeh H. Depression and anxiety in patients with Inflammatory Bowel Disease: A systematic review. Journal of psychosomatic research. 2016 Aug;87:70-80.\\u003c/li\\u003e\\n\\u003cli\\u003eIrving P, Burisch J, Driscoll R, Olsson M, Fullarton JR, Rodgers-Gray BS, et al. IBD2020 global forum: results of an international patient survey on quality of care. Intestinal research. 2018 Oct;16(4):537-45.\\u003c/li\\u003e\\n\\u003cli\\u003eLonnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life -- discovering the true impact. J Crohns Colitis. 2014 Oct;8(10):1281-6.\\u003c/li\\u003e\\n\\u003cli\\u003eNEED collaborators. Unmet health-related needs for three selected health conditions in Belgium (v2024-10-10). Zenodo 2024.\\u003c/li\\u003e\\n\\u003c/ol\\u003e\"}],\"fulltextSource\":\"\",\"fullText\":\"\",\"funders\":[],\"hasAdminPriorityOnWorkflow\":false,\"hasManuscriptDocX\":true,\"hasOptedInToPreprint\":true,\"hasPassedJournalQc\":\"\",\"hasAnyPriority\":false,\"hideJournal\":false,\"highlight\":\"\",\"institution\":\"\",\"isAcceptedByJournal\":true,\"isAuthorSuppliedPdf\":false,\"isDeskRejected\":\"\",\"isHiddenFromSearch\":false,\"isInQc\":false,\"isInWorkflow\":false,\"isPdf\":false,\"isPdfUpToDate\":true,\"isWithdrawnOrRetracted\":false,\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"archives-of-public-health\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"aoph\",\"sideBox\":\"Learn more about [Archives of Public Health](http://archpublichealth.biomedcentral.com/)\",\"snPcode\":\"13690\",\"submissionUrl\":\"https://submission.nature.com/new-submission/13690/3\",\"title\":\"Archives of Public Health\",\"twitterHandle\":\"@Archpubhealth\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC/SO AJ\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true},\"keywords\":\"Crohn’s disease, unmet needs, quality of life\",\"lastPublishedDoi\":\"10.21203/rs.3.rs-5796448/v1\",\"lastPublishedDoiUrl\":\"https://doi.org/10.21203/rs.3.rs-5796448/v1\",\"license\":{\"name\":\"CC BY 4.0\",\"url\":\"https://creativecommons.org/licenses/by/4.0/\"},\"manuscriptAbstract\":\"\\u003cp\\u003e\\u003cstrong\\u003eBackground\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eMeasuring health-related unmet needs is crucial for identifying innovation gaps and developing targeted strategies to address them. This study focused on measuring the unmet needs of patients with Crohn’s disease in Belgium using a standardised methodology that facilitates comparisons across different diseases. Crohn’s disease is a chronic condition characterised by a rising incidence over the past century and limited progress in understanding its causes or advancing effective treatments.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eMethods\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eWe conducted an online survey (n=150) and semi-structured interviews (n=20) with adults affected by Crohn’s disease. Descriptive statistics were used to analyse survey results, and thematic analysis was applied to interview transcripts. Unmet needs were classified into health, healthcare, and social aspects.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eResults\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eThe study revealed unmet needs beyond the well-known symptoms of Crohn’s. One in five patients waited over a year for a diagnosis, and 58% considered their treatment burdensome. While at least 75% reported diarrhoea, fatigue, and abdominal cramps as burdensome, around 40% experienced burdensome stress, anxiety, or depression. These symptoms, perceived as invisible, caused embarrassment, impacted sexual and family life, and led to social withdrawal. Psychological support was generally deemed insufficient. Only 50% returned to previous work levels, and 65% experienced financial impacts due to the disease.\\u003c/p\\u003e\\n\\u003cp\\u003e\\u003cstrong\\u003eConclusions\\u003c/strong\\u003e\\u003c/p\\u003e\\n\\u003cp\\u003eCrohn’s patients experienced not only burdensome physical symptoms, but were also frequently affected by significant psychological symptoms, exacerbated by comorbidities, which significantly affected their quality of life. Although specialist care was adequate, faster diagnosis and better psychological support are needed. Future studies should explore the unmet needs of children and adolescents with Crohn’s disease to complete the picture.\\u003c/p\\u003e\",\"manuscriptTitle\":\"Unmet health-related needs in patients with Crohn’s disease in Belgium: a mixed-methods study.\",\"msid\":\"\",\"msnumber\":\"\",\"nonDraftVersions\":[{\"code\":1,\"date\":\"2025-01-17 13:38:33\",\"doi\":\"10.21203/rs.3.rs-5796448/v1\",\"editorialEvents\":[{\"type\":\"communityComments\",\"content\":0},{\"type\":\"decision\",\"content\":\"Revision requested\",\"date\":\"2025-03-29T19:18:45+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2025-03-29T09:10:23+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2025-03-14T13:10:02+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"editorInvitedReview\",\"content\":\"\",\"date\":\"2025-03-13T20:03:50+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"205229343944358832569260022302046320444\",\"date\":\"2025-03-12T16:30:05+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"160078819053903510631306498869573818132\",\"date\":\"2025-03-06T16:01:17+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"263914827795231856465903064917551853198\",\"date\":\"2025-03-05T21:28:10+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewerAgreed\",\"content\":\"141732790401048565636077013480829343640\",\"date\":\"2025-03-05T07:36:45+00:00\",\"index\":\"hide\",\"fulltext\":\"\"},{\"type\":\"reviewersInvited\",\"content\":\"\",\"date\":\"2025-02-11T14:34:15+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"editorAssigned\",\"content\":\"\",\"date\":\"2025-01-14T17:15:22+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"checksComplete\",\"content\":\"\",\"date\":\"2025-01-14T17:12:05+00:00\",\"index\":\"\",\"fulltext\":\"\"},{\"type\":\"submitted\",\"content\":\"Archives of Public Health\",\"date\":\"2025-01-09T12:20:29+00:00\",\"index\":\"\",\"fulltext\":\"\"}],\"status\":\"published\",\"journal\":{\"display\":true,\"email\":\"info@researchsquare.com\",\"identity\":\"archives-of-public-health\",\"isNatureJournal\":false,\"hasQc\":true,\"allowDirectSubmit\":false,\"externalIdentity\":\"aoph\",\"sideBox\":\"Learn more about [Archives of Public Health](http://archpublichealth.biomedcentral.com/)\",\"snPcode\":\"13690\",\"submissionUrl\":\"https://submission.nature.com/new-submission/13690/3\",\"title\":\"Archives of Public Health\",\"twitterHandle\":\"@Archpubhealth\",\"acdcEnabled\":true,\"dfaEnabled\":true,\"editorialSystem\":\"em\",\"reportingPortfolio\":\"BMC/SO AJ\",\"inReviewEnabled\":true,\"inReviewRevisionsEnabled\":true}}],\"origin\":\"\",\"ownerIdentity\":\"dbc53013-0720-47ab-8646-082504208dee\",\"owner\":[],\"postedDate\":\"January 17th, 2025\",\"published\":true,\"recentEditorialEvents\":[],\"rejectedJournal\":[],\"revision\":\"\",\"amendment\":\"\",\"status\":\"published-in-journal\",\"subjectAreas\":[],\"tags\":[],\"updatedAt\":\"2025-06-16T16:05:45+00:00\",\"versionOfRecord\":{\"articleIdentity\":\"rs-5796448\",\"link\":\"https://doi.org/10.1186/s13690-025-01632-1\",\"journal\":{\"identity\":\"archives-of-public-health\",\"isVorOnly\":false,\"title\":\"Archives of Public Health\"},\"publishedOn\":\"2025-06-13 15:57:29\",\"publishedOnDateReadable\":\"June 13th, 2025\"},\"versionCreatedAt\":\"2025-01-17 13:38:33\",\"video\":\"\",\"vorDoi\":\"10.1186/s13690-025-01632-1\",\"vorDoiUrl\":\"https://doi.org/10.1186/s13690-025-01632-1\",\"workflowStages\":[]},\"version\":\"v1\",\"identity\":\"rs-5796448\",\"journalConfig\":\"researchsquare\"},\"__N_SSP\":true},\"page\":\"/article/[identity]/[[...version]]\",\"query\":{\"redirect\":\"/article/rs-5796448\",\"identity\":\"rs-5796448\",\"version\":[\"v1\"]},\"buildId\":\"8U1c8b4HqxoKbykW_rLl7\",\"isFallback\":false,\"isExperimentalCompile\":false,\"dynamicIds\":[84888],\"gssp\":true,\"scriptLoader\":[]}","source_license":"CC-BY-4.0","license_restricted":false}