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 CM 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 “Personal experience 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 [23, 24]. Thus, it was expected that patients rated fatigue high. Despite patients reporting 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), especially for patients with Crohn’s disease. Even for patients with self-reported disease activity, fatigue was rated higher than stool frequency and abdominal pain (62.5% and 43.8%, respectively). 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 [25, 26]. The data from CM 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.
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. However, bowel symptoms such as urgency and abdominal pain had a lesser impact than patients with disease activity. By contrast, concerns about the disease and symptoms from the skin, eye, and joints had high ratings.
There appears to be an agreement between patients and physicians regarding the primary goal of treating IBD: being free of symptoms —however, the definition of remission differed between patients and physicians . Physicians tend to focus on a biomedical approach with relief of stool frequency, abdominal pain, rectal bleeding, and urgency by achieving mucosal healing [5, 11], and thus follow a biomedical approach. By contrast, patients identified concepts with more psychosocial factors (e.g., “Positive attitudes,” “Accept and recognition,” “Personal experiences with Crohn’s disease,” and “Take responsibility and control over your life”) as having a high impact on everyday life (mean ≥ 4) 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 . These gaps of perception regarding when (and which symptoms to include) a treatment goal is achieved are barriers to optimal management [8, 28]. 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 (e.g., 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 significant 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 . 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 .
The ten and 11 concepts identified for Crohn’s disease and ulcerative colitis, respectively, with subsequent clusters, illustrate the complexity of living with a chronic disease. At an outpatient clinic, it can be challenging to handle all aspects affecting the disease (e.g., 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 rated the concept “Positive attitude” (Crohn’s disease) and “Take responsibility and control over your life” (ulcerative colitis) as highly important; this indicates that patients possessed resilience and strength, facilitating beneficial coping strategies to use in shared decision-making. Patients also expressed a need for knowledge-sharing with other individuals with IBD. The hospital should facilitate contact with patient advocacy organizations and similar organizations, as only 25% of patients had heard about such organizations; patients with contact to such organizations often wished that this contact had been established earlier than was the case .
The strengths of this study were the use of the validated qualitative CM 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.