Evaluation of the Patient-Reported Outcomes Measurement Information System in a Large Cohort of Patients With Inflammatory Bowel Diseases
Open accessAbstract
Background & aims Patient-reported outcomes (PROs) convey important aspects of health status, complementing physician-reported measures. The PRO Measurement Information System (PROMIS) provides valid, widely available measures applicable to patients with chronic illness and the general population. We sought to evaluate these measures in a large cohort of patients with inflammatory bowel disease (IBD). Methods By using data from the Crohn's and Colitis Foundation Association Partners internet cohort, we performed cross-sectional and longitudinal analyses to evaluate associations between PROMIS measures and validated disease activity indices (Short Crohn's Disease Activity Index and Simple Clinical Colitis Activity Index) and the Short IBD Questionnaire quality-of-life instrument. Results A total of 10,634 individuals (6689 with Crohn's disease and 3945 with ulcerative colitis or indeterminate colitis) completed PRO testing. Compared with the general population (mean PROMIS score, 50), IBD patients in this cohort reported more depression (mean, 54), anxiety (mean, 52), fatigue (mean, 56), sleep disturbance (mean, 52), and pain interference (mean, 53); and they had less social satisfaction (mean, 48). In each PROMIS domain, there was worse functioning with increasing levels of disease activity and worsening Short IBD Questionnaire scores (P < .001 for all). Longitudinal analyses showed improved PROMIS scores with improved disease activity and worsening PROMIS scores with worsening disease (P < .001 for all comparisons). Conclusions In a cross-sectional and longitudinal study, we observed differences between patients with IBD and the general population in several important aspects of health. The improvement in diverse health outcome measures with improved disease control provides strong support for the construct validity of PROMIS measures in the IBD population. Their use should advance patient-centered outcomes research in IBD.
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Of 15 studies with applicable data, 11 reported significantly higher rates or levels of anxiety in active IBD compared to inactive IBD.
“Of the remaining 15, 11 reported significantly higher rates or levels of anxiety in participants with active IBD compared to those with inactive IBD (n=13,585) (4, 18, 20, 27, 29, 31, 38, 41, 42, 44, 45).”
From Controversies Revisited: A Systematic Review of the Comorbidity of Depression and Anxiety with Inflammatory Bowel Diseases (2016) · cites this paper as [38]
Of 17 studies with applicable data, 12 reported significantly higher rates or levels of depression for active IBD compared to inactive IBD.
“Of the remaining 17 studies, 12 reported significantly higher rates or levels of depression for those with active IBD (n=13,553) (18, 20, 27, 29, 31, 34, 35, 38, 41, 43, 45, 48).”
From Controversies Revisited: A Systematic Review of the Comorbidity of Depression and Anxiety with Inflammatory Bowel Diseases (2016) · cites this paper as [38]
There was tremendous variability in measurement of anxiety and depression; 16 scales were used across the 66 unique studies examined in this systematic review and only two appear to have been validated in individuals with IBD.
“there was tremendous variability in measurement of anxiety and depression; 16 scales (5 for both anxiety and depression; 6 for depression alone; and 5 for anxiety alone) were used across the 66 unique studies examined in this systematic review and only two appear to have been validated in individuals with IBD (38, 86).”
From Controversies Revisited: A Systematic Review of the Comorbidity of Depression and Anxiety with Inflammatory Bowel Diseases (2016) · cites this paper as [38]
There are a myriad of mental health screening measures used, and few have been validated in an IBD population.
“there are a myriad of mental health screening measures used, and it is notable that few have been validated in an IBD population (38, 86).”
From Controversies Revisited: A Systematic Review of the Comorbidity of Depression and Anxiety with Inflammatory Bowel Diseases (2016) · cites this paper as [38]
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- Authors
- Kappelman, M. D., Long, M. D., Martin, C., DeWalt, D. A., Kinneer, P. M., Chen, W., Lewis, J. D., & Sandler, R. S.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- University of Pennsylvania (US)
- Corresponding author
- Kappelman, Michael D.
- ORCID
- Venue
- Clinical Gastroenterology and Hepatology
- Publisher
- Elsevier BV
- Published
- 2014-08
- Volume
- 12
- Issue
- 8
- Pages
- 1315-1323.e2
- ISSN
- 1542-3565 (ISSN-L)
- PMC
- PMC4361943
- OpenAlex
- W1971726757
- Cited by
- 178
- References
- 1
- Citations by year
- 2026: 1 · 2025: 12 · 2024: 15 · 2023: 17 · 2022: 20 · 2021: 22 · 2020: 11 · 2019: 16 · 2018: 15 · 2017: 15 · 2016: 24 · 2015: 6 · 2014: 4
- FWCI
- 7.52
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Clinical Gastroenterology and Hepatology (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute of Diabetes and Digestive and Kidney Diseases (K08DK088957, P30DK034987)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Keywords
- PROMIS, patient-reported outcomes, inflammatory bowel disease, Crohn's disease, ulcerative colitis, disease activity, construct validity, quality of life, depression, anxiety, fatigue, sleep disorders, pain interference, social satisfaction, patient-centered outcomes research
- MeSH terms
- Adolescent, Adult, Aged, Aged, 80 and over, Cross-Sectional Studies, Female, Humans, Information Systems, Longitudinal Studies, Male, Middle Aged, Inflammatory Bowel Diseases, Cohort Studies, Treatment Outcome, Patient Satisfaction
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