Article Text

Identifying and understanding disease burden in patients with inflammatory bowel disease
  1. Katrine Risager Christensen1,2,
  2. Mark Andrew Ainsworth3,
  3. Marie Skougaard2,
  4. Casper Steenholdt1,
  5. Sine Buhl1,
  6. Jørn Brynskov1,
  7. Lars Erik Kristensen2,
  8. Tanja Schjødt Jørgensen2
  1. 1Gastroenterology, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark
  2. 2The Parker Institute, Copenhagen University Hospital Bispebjerg and Frederiksberg, Copenhagen, Denmark
  3. 3Gastroenterology, Odense University Hospital, Odense, Denmark
  1. Correspondence to Dr Katrine Risager Christensen; katrine.risager.christensen{at}


Objective Physicians tend to focus on biomedical targets while little is known about issues important to patients. We aimed to identify critical concepts impacting patients with inflammatory bowel disease (IBD).

Design We performed a survey of patients with IBD in biologic therapy (n=172) and used a validated qualitative method called group concept mapping (GCM) in patient workshops. The survey included 13 questions on attitudes toward symptoms and issues related to IBD. In the eight workshops, patients (n=26) generated statements later clustered into concepts identifying issues impacting a patient’s life. Patients ranked the statements.

Results In the survey, patients’ mean age were 40 years (SD 13), 53% were women, and 38% had ulcerative colitis. They identified fatigue (57%) and stool frequency (46%) as the most critical symptoms impacting their daily lives regardless of disease activity. In the GCM workshops with Crohn’s disease (n=13) (median age 42 years (IQR 39–51) and 62% were women), 335 statements divided among 10 concepts were generated, and the three most important concepts were ‘Positive attitudes’, ‘Accept and recognition’, and ‘Sharing knowledge and experiences in life with Crohn’s disease’. In the workshops with ulcerative colitis (n=13) (median age 43 years (IQR 36–49) and 69% were women), 408 statements divided into 11 concepts were generated; the most important concepts were ‘Take responsibility and control over your life’, ‘Medication’, and ‘Everyday life with ulcerative colitis’.

Conclusion Focusing solely on IBD symptoms, patients identified fatigue and stool frequency to impact daily life the most. However, when investigating the disease burden in a broader perspective beyond classic IBD symptoms, patients identified concepts with focus on emotional health to be most important.

Trial registration The Copenhagen University Hospital, Herlev and Gentofte approved the questionnaire and methodology (work-zone no: 18015429).

  • inflammatory bowel disease
  • crohn's disease
  • ulcerative colitis

Data availability statement

Data are available upon reasonable request. The data that support the findings of the questionnaire survey study are available from the corresponding author (KRC), upon reasonable request. Data from the workshops are provided in online supplemental file 1.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

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  • Patients with inflammatory bowel disease (IBD) experience a wide range of symptoms from the bowel and other non-specific symptoms.

  • Physicians tend to focus on resolution of bowel symptoms and mucosal healing when treating patients with IBD. Recently, patient-reported outcomes for IBD have been decided to be stool frequency and abdominal pain for Crohn’s disease, and stool frequency and rectal bleeding for ulcerative colitis.

  • Perception gaps between physicians and patients on the most important targets may hinder reaching best possible outcomes of treatment.

  • It is of great importance to identify the patients’ disease burden and patients’ perception on which aspects of the disease have the most impact on daily life to define relevant and feasible treatment targets.


  • Patients rated fatigue as the symptom to have the most impact on daily life regardless of disease activity in a questionnaire.

  • By using a qualitative validated method, patients generated 10 and 11 concepts for Crohn’s disease and ulcerative colitis, respectively, and these concepts demonstrate the complexity of living with IBD.

  • The highest rated concept ‘Positive attitudes’ for Crohn’s disease and ‘Take responsibility and control over your life’ for ulcerative colitis illustrated patients’ focus on emotional and mental health rather than bowel symptoms.


  • The concepts generated by patients in this study contribute to understanding the disease burden, and thus by including patients’ perspective when identifying treatment target, the perception gap will be smaller.

  • Rather than focus solely on resolution of bowel symptoms, other important aspects may be considered and increase patients’ quality of life, as well as ease the disease burden.


Inflammatory bowel diseases (IBDs; Crohn’s disease and ulcerative colitis) are chronic inflammatory disorders of the gastrointestinal tract. The aetiology is unknown; however, the disease mechanisms originate from a dysregulated immune system in the mucosa leading to inflammation. The disease substantially impacts every aspect of a patient’s life.1 2 Given the chronic nature of IBD and the need for close contact with the healthcare system, a good relationship between the patient and the physician is essential for optimal disease management.3 4

In recent years, defining treatment targets and finding effective strategies to reach the targets for patients with IBD have gained traction. Physicians often focus on achieving mucosal healing evaluated by endoscopy and relief of patient-reported outcomes directly related to mucosal inflammation, for example, stool frequency, abdominal pain, and rectal bleeding.5 6 By contrast, patients focus on being well, which often includes a broader range of symptoms not necessarily directly related to bowel symptoms.7–9 Furthermore, the patients’ perceptions of illness with psychological and social factors influence treatment outcomes.3 10 Several studies identified perception gaps between healthcare professionals and patients regarding how to best manage the disease, how much the disease impacts health-related quality of life, and how to perceive remission.6 8 11 Physicians tend to underestimate the impact the disease has on patients’ lives, even when patients are in remission.8 This perception gap can lead to communication gaps between physicians and patients.11 Hence, in the process of defining treatment targets, inclusion of patients’ perspective seems necessary in order to modify targets to truly reflect concerns of patients, resulting in more reachable goals. Furthermore, identification of patients’ disease burden could help to understand patients’ priorities and thus minimise the communication gaps by developing communication tools based on this knowledge. The group concept mapping (GCM) method is a qualitative and highly effective method to identify domains that impact patients’ lives.12 13 By using the GCM, the patients’ perceptions of life with a chronic disease are identified without the intervening of preconceived presumptions from healthcare professionals. We aimed to identify critical concepts impacting patients with IBD on biologic therapy with a survey to quantitatively measure the issues that impact patients’ lives and use the GCM method to identify all essential aspects of IBD qualitatively.


The study took place at the tertiary outpatient IBD Clinic, Copenhagen University Hospital, Herlev and Gentofte, between May 2018 and January 2020. The study comprised a questionnaire survey and eight workshops with patients with IBD conducted using GCM.


Patients receiving biologic therapy were consecutively invited to participate when visiting the IBD Clinic. Inclusion criteria for invitation to the questionnaire survey were as follows: a documented history of Crohn’s disease or ulcerative colitis and receiving biologic treatment (infliximab, adalimumab, golimumab, vedolizumab, or ustekinumab). The exclusion criterion for the questionnaire survey was incomplete completion, as defined below. For the workshops, inclusion criteria were as follows: well-established diagnosis of Crohn’s disease or ulcerative colitis, treatment with biologic treatment, azathioprine, or both, and signed informed consent. Exclusion criteria for the workshops were significant comorbidity (judged by the investigators), Crohn’s disease with predominantly perianal fistula disease, and ulcerative colitis with an ileostomy. The inclusion of patients in biologic treatment and/or azathioprine was to ensure patients had experienced a certain level of disease activity impacting their lives, and the IBD Clinic had a well-defined cohort of patients in biologics to include in the survey.


The questionnaire comprised 13 questions (online supplemental table A1) and was part of a larger survey answered using REDCap via a touch screen.14–16 The survey was designed to identify the symptoms and outcomes patients with IBD found important in daily life and when visiting the outpatient clinic. The construction of these items and respond options was inspired by content in patient-reported outcome measurements/clinical indices (eg, stool frequency, abdominal pain, rectal bleeding, urgency),17–19 and health-related quality of life measurements (domains such as daily function, sexual intimacy, worries/concerns, bowel functions, fatigue).20 21 Validation of the questionnaire was divided into three sets of interviews of five patients with IBD receiving biologic therapy in each set (n=15).22 Analysis of the first set of interviews resulted in changes in the wording and the addition of response options. Analysis of the second set of interviews resulted in changes in the construction of the questionnaire and the addition of questions that patients found relevant and important. The final set of interviews resulted in changes in the layout.

Group concept mapping

In short, GCM is a formal group process using a structured approach to identify ideas on a topic of interest, and then organise them into domains based on a mixed-method participatory design that incorporates group processes and multivariate statistical analyses (multidimensional scaling and hierarchical cluster analysis).23 24 GCM is considered highly effective for developing outcome measures, for example, patient perceptions when investigating healthcare.12 13 25 Within GCM, participants are involved in several steps of the conceptual process and the final results are illustrated in maps where ideas developed during the process are organised thematically.26 The GCM process includes the following phases: (1) preparation and generation of seeding question by the researchers, (2) generation of statements (individual brainstorming done by the participants on the initial task, for example, ‘Thinking as broadly as you can—please list all your concerns, issues and beliefs that impact your life with Crohn’s disease/ulcerative colitis’), (3) structuring statements (sorting and rating of importance of statements done by the participants), (4) program performing GCM analysis (sorting results from step 3 serves as an input to the multidimensional scaling (CS Global MAX; Concept Systems27) and to the creation of maps25), (5) interpreting the result (validation done by the participants facilitated by the researchers), and (6) utilisation of the result.26 To identify which statements were of most importance for the participants, they were asked to rate the importance of each statement on a 5-point scale: (1) ‘not important at all’, (2) ‘a little important’, (3) ‘somewhat important’, (4) ‘very important’, and (5) ‘of great importance’. Mean of importance assigned by the patients for each statement was calculated using Wilcoxon two-sample test to rank the concepts. After the eight workshops, the four results from each disease type were merged. This was done by TSJ and MS using thematic analyses, forming concepts from the clusters organised by themes by the participants in the workshop. Furthermore, TSJ and MS facilitated all workshops.

When participating in the workshop, the participants stated their working status and filled in visual analogue scales (VAS) (0–100, 100 being the worst outcome) of fatigue and general pain. Additional information of the participants regarding demographic characteristics, disease activity (patients filled in Harvey Bradshaw Index (HBI) or the Simple Clinical Colitis Activity Index (SCCAI) at every visit at the IBD Clinic documented in the electronic medical record) and treatment was retrieved from medical records equivalent to the time of the workshops. Patient-reported disease activity was converted from the HBI and SCCAI (remission HBI <5 or SCCAI <3, mild disease activity HBI 5–7 or SCCAI 3–5, moderate disease activity HBI 8–16 or SCCAI 6–11, and severe disease activity HBI >16 or SCCAI >11).18 19


As appropriate, descriptive statistics were expressed as percentages for discrete variables and median with IQR for continuous variables. For comparisons of study populations, the Χ2 and Fisher’s exact tests were used for categorical data, and the Wilcoxon exact rank-sum test was used to compare continuous data unless otherwise stated. Two-sided p-values of <0.05 were considered significant. Questionnaires with less than 50% completed answers were defined as incomplete and excluded from the analysis. As described above, multidimensional scaling was used to transform the sorted data from the GCM workshops into distances, with smaller distances indicating statements that were sorted together more frequently (ie, statements perceived by the participants to be conceptually similar). Information on item distances generated using multidimensional analysis was then used as input for cluster analysis to identify groups of related statements. Statistical analyses were performed using R studio V.3.6.1, ConceptSystems, and IBM SPSS statistics V.25.



A total of 172 of 371 (46%) eligible patients responded to the survey. Eight patients were excluded due to incomplete responses, leaving 164 patients for analysis.16 Patient characteristics are shown in table 1.

Table 1

Survey study population

Patients were asked to choose the symptoms having the greatest impact on their daily life. All symptoms were ranked by patients’ ratings (figure 1A). The three issues/symptoms, considered most important by patients, were ‘fatigue’ (n=94, 57%), ‘stool frequency’ (n=75, 46%), and ‘concerns about the disease’ (n=57, 35%). Sensitivity analyses were performed for self-reported disease activity, type of diagnosis and gender. Significantly, more patients with self-reported disease activity (mild to severe disease activity, n=64, 39%, table 1) reported that stool frequency (n=40, 63%, p=0.001), abdominal pain (n=28, 44%, p=0.026), urgency (n=27, 42%, p=0.003), and symptoms from fistulas (n=10, 15.6%, p=0.03) impacted their daily life (figure 1B). Despite self-reported remission (n=100, 61%), some patientreported stool frequency (n=35, 35%), abdominal pain (n=26, 26%), and urgency (n=20, 20%) to impact daily life. No significant differences were found for fatigue regarding disease activity (n=43, 65.6% for disease activity; and n=52, 52% for no disease activity, p=0.11). However, the number of patients considering fatigue to be important was significantly different between patients with Crohn’s disease (n=68 (65%)) and ulcerative colitis (n=26 (39%)) (p=0.001). Similarly, the number of patients considering ‘influence on mood’ as important also differed between the diseases (Crohn’s disease n=28 (27%) and ulcerative colitis n=26 (39%); p=0.001). No other significant differences were found between the disease types. In addition, significantly more women than men (n=57 vs 37, p=0.03) chose fatigue to have impacted daily life; no other differences between genders were found. Furthermore, sensitivity analysis with disease duration and age did not show any significant associations.

Figure 1

Patients choose five symptoms out of the listed possible symptoms and issues. The patients did not rank the five picked symptoms/issues. The percentages indicate the proportion of patients who chose the symptom/issue. (A) Rating of symptoms chosen by patients to have the most significant impact on daily life, all patients. (B) Green columns=patients with reported disease activity (n=64, 39%), light green columns=patients with no reported disease activity (n=100, 61%), *p<0.05, **p<0.01, ***p≤0.001. (C) Symptoms and issues patients wanted covered in medical consultations.

The symptoms and issues that had the highest preference for patients to discuss during medical consultations with their treating physician were addressed in subsequent questions (figure 1C). Sensitivity analyses for disease activity and type of diagnosis showed no differences.

Comparing the two sets of issues, the overlap between symptoms patients rated to have an impact on daily life and symptoms they wanted to discuss with the physicians was at best modest: 67% overlap for fistula symptoms, 66% for fatigue, 65% for rectal bleeding, 62% for symptoms from the skin, eye and joints, 60% for pain other than abdominal, 54% for abdominal pain, 49% for influence on mood, 43% for influence on daily life, 43% for urgency, 38% for stool frequency, and 10% for influence on sex life. On the other hand, a small percentage of patients (5%–15%) wanted medical consultations to cover issues and symptoms they did not rate as impacting daily life. During self-reported periods of well-being, patients reported normalisation or improvement of stool frequency (n=86, 63%), absence of abdominal pain (n=89, 65%), absence of rectal bleeding (n=78, 57%), reduction in urgency (n=63, 46%), and improvement in fatigue (n=47, 34%).

Group concept mapping

Of the 79 patients who agreed to participate, 26 of these (35%) could participate on the same dates as 2–3 other participants to form the workshops (online supplemental figure A1). Thirteen patients had Crohn’s disease, and 13 had ulcerative colitis. The participants were stratified according to diagnosis. Patient characteristics are described in table 2. The participants were compared with patients who did not participate but had consented (non-participants) regarding differences in age, diagnosis, gender, disease activity, fatigue, type of treatment, and disease duration (online supplemental table A2). There was a significant difference in the level of fatigue (participants’ median VAS 4 (IQR 2–5), compared with non-participants’ median VAS 6 (IQR 3.5–8), p=0.04). No other parameters differed. A comparison of baseline data between Crohn’s disease and ulcerative colitis for participants did not show any significant differences (table 2).

Table 2

Concept mapping study population

Crohn’s disease

In the workshops with patients with Crohn’s disease, 335 statements were generated, resulting in 10 concepts (figure 2). The concepts included between 15 and 57 statements, divided between two and six clusters (online supplemental table A3).

Figure 2

Concepts from the group concept mapping workshops. The merge of the results from the four workshops for each diagnosis. Patients with Crohn’s disease (CD) generated 10 concepts, and patients with ulcerative colitis (UC) generated 11. Numbers indicate the mean of patients’ rating of statements included in the concept: 1: ‘not important at all’, 2: ‘a little important’, 3: ‘somewhat important’, 4: ‘very important’, and 5: ‘of great importance’. Blue circles: highest-rated concepts.

The three highest-rated concepts were ‘Positive attitudes’ (mean rating=4.3 (SD 0.6)), ‘Accept and recognition’ (mean=4 (0.8)), and ‘Sharing knowledge and experiences in life with Crohn’s disease’ (mean=4 (0.7)) (table 3). The concept ‘Positive attitudes’ contained the clusters ‘a positive approach to life’ and ‘I am unstoppable’, expressing resilience in these patients despite the chronic disease. The concept ‘Accept and recognition’ included five clusters, where ‘a condition of life’ and ‘learn to live with the disease’ indicated acceptance of the disease. In contrast, the clusters ‘accept can be difficult’, ‘losing control’, and ‘doctors take control’ in the same concept indicated feeling burdened and not being able to do anything about the disease. The concept ‘Sharing knowledge and experiences in life with Crohn’s disease’ expressed the need for ‘knowledge-sharing’ between patients themselves and meeting others with the diagnosis as support to accept and live with the disease.

Table 3

Results from workshops with patients with Crohn’s disease and ulcerative colitis

In addition to the concepts the patients rated highest, concepts with many statements expressed a complexity of themes. The three concepts with most statements were as follows: ‘Everyday life with Crohn’s disease’ (statements=57, mean rating 3.8 (0.8)), ‘Meeting the hospital’ (statements=55, mean rating 3.6 (0.8)), and ‘Worry and thoughts for the present and future’ (statements=43, mean rating 3.9 (0.9)) (table 3). ‘Everyday life with Crohn’s disease’ included statements about practical issues such as always being near a toilet, how frequent toilet visits influence and limited social life, and how lack of energy limited family life and other relationships. The many statements in this concept expressed the complexity associated with varying life circumstances and family constellations, and thus different experiences of living with Crohn’s disease. The concept ‘Meeting the hospital’ included both positive and negative experiences with hospitals. However, the negative aspects dominated, and patients did not feel recognised in the healthcare system. Furthermore, the patients expressed dissatisfaction with the communication with especially the physicians and with the changing physicians and nurses throughout the treatment course. The concept ‘Worry and thoughts for the present and future’ included statements expressing worries about everything from family to the next colonoscopy. The most important worries were the uncertainty of when the disease would flare up, if more operations were needed, and if the disease would be transmitted to their children.

Ulcerative colitis

Patients with ulcerative colitis generated 408 statements, resulting in 11 concepts (figure 2). The concepts contained 18–61 statements divided among 4–7 clusters (online supplemental table A4).

The three highest-rated concepts were ‘Take responsibility and control over your life’ (mean rating 4.0 (0.8)), ‘Medication’ (mean 3.9 (1)), and ‘Everyday life with ulcerative colitis’ (mean 3.7 (0.7)) (table 3). Besides being the most important concept for patients with ulcerative colitis, ‘Take responsibility and control over your life’ also included most statements (in total 61). The concept comprised the clusters ‘accept’, ‘no worries’, and ‘openness about the disease’, which expressed awareness of choosing an appropriate coping strategy for handling the disease and living a balanced life. As for Crohn’s disease, the cluster ‘I can do it’ illustrated resilience and strengths to cope and manage the disease, just as ‘positive experience’ reflected the positive developments the disease generated in patients. In the concept ‘Medication’, patients had concerns about the effect of the treatment on the body and whether the treatment would continue to work, expressed in the clusters ‘side effects’, ‘does the medication work?’ ‘the effect of the medication on the body’, and ‘the future’. In perspective to these four clusters, patients also formed the cluster ‘Positive toward medication’. In the concept ‘Everyday life with ulcerative colitis’, the cluster ‘to live with the disease’ embraced a broader perspective on how significant the burden of the disease was. The clusters ‘limitations due to the disease’, ‘family life’, and ‘practical issues’ illustrated more concrete issues like limitations due to the issues of always being near a toilet and how lack of energy limited family life. Fatigue and pain were the main themes in the cluster ‘symptoms’.

In addition to ‘Take responsibility and control over your life’, two concepts included high numbers of statements demonstrating a complex area for the patients: ‘Meeting the hospital’ (48 statements) and ‘Relationships/family/social life’ (45 statements) (table 3). In the concept ‘Meeting the hospital’ (mean rating 3.5 (0.8)), positive and negative aspects of meeting the healthcare system were represented. The patients underscored the importance of having the same doctor when visiting the outpatient clinic and how it helped them feel safe and comfortable when it was fulfilled—in addition, the concept contained statements about the robust effect of biologic therapy. In the ‘Relationships/family/social life’, limitations in social life and everyday activity were highlighted by the patients, including difficulties finding a partner and telling others about the illness, which also illustrated the taboo patients felt about the disease.


We conducted a quantitative and a qualitative study to identify critical domains impacting everyday life. In the first part, comprising a quantitative questionnaire survey, patients identified fatigue and stool frequency as symptoms that affected their daily life. There was a discrepancy between the symptoms classified by patients as having the most significant impact on daily life and the symptoms and issues these patients wanted to be covered at their medical consultations. In the second part, we used the qualitative GCM method to divide the complexity of living with IBD into concepts directly from patient input. We identified three concepts most important to patients with Crohn’s disease: ‘Positive attitudes’, ‘Accept and recognition’, and ‘Sharing knowledge and experiences in life with Crohn’s disease’ and three concepts for ulcerative colitis: ‘Take responsibility and control over your life’, ‘Medication’, and ‘Everyday life with ulcerative colitis’.

Fatigue is a well-known symptom affecting patients with IBD, even when in remission.28 29 Thus, it was expected that patients rated fatigue high. Even though patients reported disease activity, fatigue was rated as having the most impact on daily life (65.6% of patients with disease activity and 52% of patients with no disease activity), and had higher ratings than stool frequency and abdominal pain (62.5% and 43.8%, respectively). Consistently with previous studies especially patients with Crohn’s disease and women reported fatigue.29 30 Despite the high prevalence, fatigue is not established as a regular outcome, which might be due to the few treatment options available hampering healthcare professionals’ proper management of these symptoms.31 32 Nevertheless, the healthcare professionals may be aware of some selected groups (eg, Crohn’s disease and women) who could be more inclined to develop fatigue. The data from GCM workshops included statements referring to fatigue and (especially) lack of energy; however, a surprisingly small proportion of all statements were about bowel symptoms. More statements included practical issues related to bowel symptoms, such as being near a toilet all the time. The low disease activity in patients with Crohn’s disease (judged from the HBI at the time of the workshop) could have influenced the focus on issues other than bowel symptoms. This finding did not appear to be the case for patients with ulcerative colitis because there was a higher percentage of patients with moderate disease activity. In the questionnaire survey, stool frequency, urgency and abdominal pain had a lesser impact in patients in self-reported clinical remission compared with patients with disease activity. By contrast, symptoms from the skin, eye, and joints had high ratings for patients in self-reported clinical remission. However, one-third of patients who answered the questionnaire and had no disease activity chose stool frequency to impact daily life, which might be due to more psychological factors such as concerns about the unpredictable nature of the disease and, therefore, the continuing need for planning all activities close to necessities.

There appears to be an agreement between patients and physicians regarding the primary goal of treating IBD: being free of symptoms33—however, the definition of remission differed between patients and physicians.8 Physicians tend to focus on a biomedical approach with relief of bowel symptoms by achieving mucosal healing.5 11 By contrast, patients identified concepts with more psychosocial factors (eg, ‘Positive attitudes’, ‘Accept and recognition’, ‘Sharing knowledge and experiences in life with Crohn’s disease’, and ‘Take responsibility and control over your life’) as having a high impact on everyday life in terms of impact on health and interest in discussing them with their physicians. This finding implies that patients have a more biopsychosocial approach to the disease.10 These gaps of perception regarding when (and which symptoms to include) a treatment goal is achieved are barriers to optimal management.8 34 These gaps have been documented to lead to communication gaps that weaken patient–physician relationships.6 11 Only a smaller percentage of the patients who considered a symptom to have a significant impact wanted to discuss this issue with their physician (eg, 66% for fatigue and 39% for stool frequency). Furthermore, patients were reluctant to discuss deeply personal issues such as the impact on sexual life, even though this was considered to have a impact on their well-being. This discrepancy might be explained by the patients’ perspective on the deficient communication with physicians (‘lack of understanding’, ‘lack of information’, ‘lack of communication’, and ‘lack of interest for patient wishes’) and the lack of seeing the same physician at each outpatient visit. These findings agree with previously reported surveys, where patients were uncomfortable talking with the physicians about emotional and intimate matters.6 11 This finding might reflect a lack of support from the physician concerning these sensitive topics.35 Patients also expressed a feeling of losing control and that the physicians take control. Patients lacking control tend to have higher levels of anxiety and depression, while the feeling of control of the disease and treatment positively influences health-related quality of life.10

At an outpatient clinic, it can be challenging to handle all aspects affecting the disease (eg, socioeconomic and psychological challenges), and the primary focus in a time-limited consultation has conventionally been the medical treatment of the patients. Nevertheless, it is possible to improve communication between patients and physicians by (for example) shared decision-making with a more balanced biopsychosocial and biomedical approach. This increases patient satisfaction and limits patients feeling they are losing control. Furthermore, disease-related education of patients has been shown to decrease concerns and fears.4 10 The patients’ resilience and strengths facilitate beneficial coping strategies which can be used in shared decision-making.

The strengths of this study were the use of the validated qualitative GCM method, where patients were involved in the generation of clusters, and the use of a validated questionnaire to capture specific information on patient symptoms. Limitations include selection bias because the workshops lasted an entire day; this might have excluded patients with full-time jobs, and the nature of the disease might have caused deselection from patients themselves, with more healthy individuals consenting. Among individuals who consented, except for fatigue, there was no significant difference between participants and non-participants. It would have been ideal to obtain information on patients who did not consent to address selection bias fully. Regarding the questionnaire, the lack of information about the non-responders makes the exclusion of selection bias impossible. Inclusion of patients on biologics or azathioprine ensured that patients had experience with a certain level of disease severity. Data collection by questionnaire facilitated the risk of recall bias.

The results of this study contributed to the understanding of patients’ burdens living with IBD and could help physicians decide what to focus on to bridge the perception gap between physicians and patients. Such an understanding might ease the disease burden of patients with IBD. The construction of 10 concepts for Crohn’s disease and 11 concepts for ulcerative colitis illustrated the complexity of living with IBD. Symptoms such as fatigue and stool frequency impacted daily life regardless of disease activity or clinical remission. Patients rated concepts focusing on psychosocial factors and thus emotional health as having the most significant impact on everyday life with IBD.

Data availability statement

Data are available upon reasonable request. The data that support the findings of the questionnaire survey study are available from the corresponding author (KRC), upon reasonable request. Data from the workshops are provided in online supplemental file 1.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants. The Copenhagen University Hospital, Herlev and Gentofte approved the questionnaire and methodology (work-zone no: 18015429). For the workshops, informed consent from the participants was obtained before participation.


Supplementary materials

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  • Twitter @ResearchIbd

  • Correction notice This article has been corrected since it published online to correct figure 1.

  • Contributors Conceptualisation—all authors. Data curation—TSJ, MS, KRC. Formal analysis—TSJ, MS, KRC. Funding acquisition—JB, LEK, KRC. Investigation—TSJ, MS, KRC, JB. Methodology—all authors. Project administration—KRC, TSJ. Validation—all authors. Writing (original draft)—KRC, TSJ. Writing (review and editing)—all authors. All authors approved the final version of the manuscript. TSJ is the guarantor of this study.

  • Funding This study was supported by an unrestricted grant from Pfizer.

  • Competing interests KRC participated in an advisory board for Gilead Nordic and received unrestricted grants from Pfizer and Gilead Nordic, and served as a speaker for Janssen Pharmaceuticals. MS received research funding from Eli Lilly and Pfizer. CS served as a speaker and advisory board member for MSD. JB has been a consultant and/or an advisory board member and received fees and/or research grants from AbbVie, Pfizer, MSD, Takeda, Janssen, and Gilead. TSJ served as a speaker and consultant for AbbVie, Pfizer, Roche, Novartis, UCB, Biogen, Gilead, and Eli Lilly. LEK served as a speaker and consultant for Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen and received research grants from Pfizer, AbbVie, UCB, Biogen, Novartis, Eli Lilly, and Janssen. MAA and SB declare no conflicts of interest.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.