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

Abstract

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.

Exploring occupational balance in adults in Sweden

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Gratitude uniquely predicts lower depression in chronic illness populations: A longitudinal study of inflammatory bowel disease and arthritis.

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A qualitative study of the impact of Crohn's disease from a patient's perspective

“…However, these have focused on a wide range of different outcomes. For example, Burkhalter et al 4 explored patients' clinical needs, Norton et al 5 compared experiences of patients receiving adalimumab with a group of biologic naïve patients and Dür et al 6 focused on what they termed the determinants of health. The overall focus of these studies was on how patients dealt with the burdens of symptoms and associated limitations in functioning resulting from CD.…”

“…Several stated that CD affects QoL,4 6 11 but none of the studies had assessed that outcome 12–15. Where they had used outcome measures, these were standardised measures of health-related quality of life (HRQL), such as the IBDQ 16.…”