Health determining concepts important to people with Crohn's disease and their coverage by patient-reported outcomes of health and wellbeing

Background and aimsBusy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD.MethodsTwo systematic literature reviews were done to identify relevant DHs and clinically relevant PROs. We conducted a qualitative narrative biographical study and mapped the patients' experiences to concepts that determine health in a positive way. Experiences, DHs and the items of the PROs were compared by the WHO International Classification of Functioning, Disability and Health (ICF) as a common framework.Results15 people with CD with a median age of 46 years (IQR 34-60) and median disease duration of 15 years (IQR 8-30) participated. Self-efficacy, social support, job satisfaction and occupational balance were mentioned most frequently. While participation appeared to have greater meaning to men, appreciation and resilience seemed to be more important for women. Of 18 PROs the Perceived Stress Questionnaire (PSQ), the Inflammatory Bowel disease - Self-efficacy scale (IBD-SES), the Life Orientation Test - Revised (LOT-R) and the Patient Activation Measure 13 (PAM-13) cover most DHs.ConclusionsThis is the first study elaborating the coverage of patient's perspective by commonly used PROs in CD. The findings could support health professionals to focus on DHs in people with CD in clinical practice and research.