Background/Purpose: Crohn’s disease (CD) has a major impact on functioning, health and well-being and patient-reported outcome (PRO) instruments have not been analysed from the perspective of patients with CD so far. The clinical setting often restricts the opportunities to focus on other health determining concepts aside disease activity. We aimed to explore which concepts determining health in a positive way are important to patients with CD, their coverage by patient-reported outcome instruments and to recommend appropriate ones for the future.

Methods: A qualitative study was conducted: Told life stories were analysed by the biographical narrative interpretative method, findings were linked to concepts determining health in a positive way. Furthermore the qualitative data were analysed regarding gender differences. Two systematic literature searches were done to identify relevant concepts and clinically relevant PROs. Concepts and the items of the PROs were linked to WHO International Classification of Functioning, Disability and Health (ICF) codes and compared to evaluate instruments’ coverage.

Results : 15 people with CD with a median age of 46 years (IQR 34 – 60) and median disease duration of 15 month (IQR 8 – 30) participated. 14 participants mentioned self-efficacy, social support (93%) and 13 described job satisfaction (87%) as being important which were the three commonest concepts. Most of them experienced relations between their health behaviour and disease course, and tried to “gain control over their disease” by being self-efficient. While participation had more meaning for men, appreciation and resilience was more important for women. Work-life balance and secondary illness gain was hardly meaningful. The 9 patient-reported outcome tools (see table 1) covered 9 different ICF codes (see table 2).

Conclusion: This is the first study elaborating the coverage of patient’s perspective by commonly used patient-reported outcome instruments. The use of the perceived stress questionnaire – recent is recommended because it covered most concepts, as well as the use of inflammatory bowel disease self-efficacy scale due to the importance of self-efficacy for people with CD. Social support, self-efficacy and gender differences at several concepts should get more attention in clinical daily routine and in the research of people living with CD.