Successful collection of patient-reported outcomes shows improvement in quality of life, depression, and disease activity among patients with Inflammatory Bowel Disease: A real-world study

Introduction: Patient reported outcomes (PRO) including patient disease activity scores, quality of life, and depressive symptoms are increasingly being used for clinical care in patients with inflammatory bowel disease (IBD). However, little is known about performance of PROs over time in a real-world setting. Methods: PROs were collected from a tertiary care IBD center from the electronic medical records (EMR) from 2018–2020. Quality of life was measured with the Simple Inflammatory Bowel Disease Questionnaire (SIBDQ). Disease activity was measured using the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). Depressive symptoms were measured using the Patient Health Questionnaire-8 (PHQ-8). Results: PRO collection rate from 1,373 patients was 88%. PHQ and SIBDQ were highly correlated (0.718, p < 0.05). HBI and PHQ-8 (0.528, p < 0.05) and SIBDQ (-0.676, p < 0.05) were moderately correlated. For CD patients, age 40–65, corticosteroid use, and psychiatric medication use were associated with lower HBI and SIBDQ and higher PHQ scores. Age 40–65, corticosteroid use, and psychiatric medication use were associated with lower SCCAI and SIBDQ and higher PHQ-8 scores for CD and UC patients. Mean change [95% CI] increased for SIBDQ by 2.9 [2.3 to 3.6] in CD and 4.7 [3.8 to 5.6] in UC. Mean change [95% CI] decreased for PHQ-8: -1.0 [-1.3 to -0.8] in CD and − 1.7 [-2.2 to -1.3] in UC. This remained significant in both cognitive and somatic subscales. Conclusion: PRO collection was highly successful using EMR implementation in a tertiary care clinic setting. Corticosteroid use and psychiatric medication use were associated with worse disease activity, depressive symptom and quality of life scores. Moreover, PROs demonstrated depressive symptoms (both cognitive and somatic subscales), and quality of life symptom scores improved over time.