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P690 Worries of patients with inflammatory bowel disease: an indicator of well-being?—results of survey amongst 1 096 participants in a European bilingual clinical cohort

V. Pittet*1, C. Vaucher1, F. Froehlich2, B. Burnand1, P. Michetti3, M. H. Maillard4

1Institute of Social and Preventive Medicine, Healthcare Evaluation Unit, Lausanne, Switzerland, 2University Hospital Basel, Division of Gastroenterology & Hepatology, Basel, Switzerland, 3Clinique La Source-Beaulieu, Crohn and Colitis Centre, Lausanne, Switzerland, 4Lausanne University Hospital, Department of Gastroenterology & Hepatology, Lausanne, Switzerland


Patient-reported perceptions on healthcare are important components to be considered within a holistic view of quality of care. Worries related to disease and treatments may be seen as one of those, indicating areas of unresolved issues that potentially affect disease burden and overall well-being. We aimed to explore worries of patients included in the national bilingual Swiss IBD cohort (SIBDC).


We conducted 2 focus groups with 14 patients to explore daily worries related to IBD. Using results from qualitative content analysis, we built a questionnaire comprising 37 items, complementing the pre-existing tool assessing IBD worries and concerns (ie, RFPIC questionnaire1, 1991). This was sent to 2 350 SIBDC patients. Answers were collected on a Visual Analogue Scale (VAS) ranging from 0 to 100. Medians (interquartile range [IQR]) were calculated. A principal component analysis (PCA) was used to draw main worries dimensions, and linear multiple regressions were performed to assess associations with patients’ characteristics.


In total, 1 096 patients replied to the survey, with 54% females, 54% CD, 35% tertiary level educated, and 72% full/part-time employed. The 6 most important worries are listed in Table 1.

Table 1 Median (IQR) of the top 6 worries;* Wilcoxon rank-sum test p < 0.0014

Link between stress and disease68 (43–86)66 (30–82)*70 (49–88)*
Fatigue related to the disease65 (30–88)58.5 (21–81)*72 (45–92)*70 (35–91)*61 (23–85)*
Loss of bowel control70 (38–92)64 (32–84)*76 (46–95)*
Developing cancer69 (43–88)66 (32–85)*72 (49–90)*
Chronicity of the disease67 (43–86)
Having to take lifelong treatments65 (23–87)

Significant differences related to worries were observed between gender and type of diagnosis. PCA yielded 4 main dimensions of worries linked to physical and mental impact of the disease (D1), sexuality and intimacy (D2), constraints and uncertainty related to the disease (D3), and socialisation and stigmatization (D4). The Cronbach’s α for dimensions’ internal consistency varied between 0.79 and 0.89. Higher level of preoccupation was observed for women (D1 and D2), French-speakers (D2), and CD patients (D1). Age was associated with decreasing and being retired or annuitant with increasing level of D1–D4 preoccupations.


Worries need to be considered when discussing perspectives around good quality of care. IBD are high-burden diseases, and patients have regular worries related to their illness condition that need to be assessed and updated regularly, taking into account advances in healthcare over time.


[1] Drossman DA, Leserman J, Li ZM, et al. The rating form of IBD patient concerns: a new measure of health status. Psychosom Med 1991;53(6):701–12.