Implementing routine medical and mental health screening in children and adolescents with Inflammatory Bowel Disease

Abstract

Objectives Living with inflammatory bowel disease (IBD) can have a significant impact on children. Many children with IBD experience symptoms of anxiety or depression. Routine screening for mental health has been recommended. This preregistered study aimed to describe the implementation of patient-reported outcome measures (PROMs) in routine healthcare at an outpatient IBD clinic, as well as assess its feasibility.
Methods Before every outpatient clinic appointment, PROMs were distributed to all patients aged 8 and older, as well as their parents. PROMs related to anxiety, depression, fatigue, pain and IBD-related quality of life were selected by a paediatric gastroenterologist and psychologist, and integrated into electronic health records. Patients who completed PROMs on two occasions were invited to complete a user experience survey, focussing on their experiences with the PROMs.
Results A total of 2910 questionnaires were distributed. Adherence was 44.7%, with 175 patients or parents completing at least one questionnaire. User experience results of 24 patients showed they were satisfied with both the patient portal and the discussion with the healthcare provider. Five patients perceived the length of the questionnaires as too long, or as having to complete the questionnaires too frequently. Outcomes of 114 patients with 187 sets of questionnaires, described in the supplement, showed that up to 82% reported pain and/or fatigue. About 20% of patients reported symptoms of anxiety and/or depression.
Conclusions Implementation of PROMs is feasible, but the length and frequency of PROMs can be improved. Healthcare professionals wanting to work with PROMs should carefully decide which PROMs to select.