Original articleAlimentary tractEvaluation of the Patient-Reported Outcomes Measurement Information System in a Large Cohort of Patients With Inflammatory Bowel Diseases
Section snippets
Overall Study Design
Within a large internet cohort of adult patients with IBD, we performed a series of cross-sectional and longitudinal analyses to evaluate associations between PROMIS measures and disease activity indices, a disease-specific health-related quality-of-life (HRQOL) instrument, prednisone use, and ileal pouch-anal anastomosis (IPAA) status.
Study Population
The Crohn’s and Colitis Foundation of America (CCFA) Partners study is a longitudinal internet-based cohort of patients with IBD. The development of the cohort
Study Population
A total of 10,634 individuals with self-reported IBD joined CCFA Partners through October 22, 2012, and completed PRO testing. Of these, 6689 reported having CD, and 3945 reported UC or IC. Seventy-one percent of the study participants were women. The mean age of the study population was 44 years, and the mean time from diagnosis to PRO testing was 14.9 years. Additional demographic details are provided in Table 1.
Patient-Reported Outcomes Measurement Information System Testing
The mean PROMIS scores for depression, anxiety, fatigue, sleep disturbance,
Discussion
PROs are an essential component of patient-centered research, including clinical trials and comparative effectiveness research. The PROMIS provides measures that are efficient (minimizes item number without compromising reliability), flexible (enables optional use of interchangeable items), and precise (has minimal errors in estimate).5, 6 PROMIS measures have been evaluated extensively in the general population and in individuals with chronic illness.8 Here, we report a wide-scale,
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Conflicts of interest The authors disclose no conflicts.
Funding This research was supported, in part, by a grant from the Crohn’s and Colitis Foundation of America, and by a grant from the National Institute for Diabetes and Digestive and Kidney Diseases (P30 DK034987 to R.S.S.).