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Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases.

ABSTRACT: 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).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.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).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.

SUBMITTER: Kappelman MD

PROVIDER: S-EPMC4361943 | biostudies-literature | 2014 Aug

REPOSITORIES: biostudies-literature

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Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases.

Kappelman Michael D MD Long Millie D MD Martin Christopher C DeWalt Darren A DA Kinneer Patricia M PM Chen Wenli W Lewis James D JD Sandler Robert S RS

Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association 20131029 8

<h4>Background & aims</h4>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).<h4>Methods</h4>By using data from the Crohn's and Colitis Foundation Association Partne ...[more]

PMID: 24183956

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Project description:Background and objectiveThe Patient-Reported Outcomes Measurement Information System (PROMIS-29) is gaining popularity as healthcare system funders increasingly seek value-based care. However, it is limited in its ability to estimate utilities and thus inform economic evaluations. This study develops the first mapping algorithm for estimating EuroQol 5-Dimension 5-Level (EQ-5D-5L) utilities from PROMIS-29 responses using a large dataset and through extensive comparisons between econometric models.MethodsAn online survey was conducted to collect responses to PROMIS-29 and EQ-5D-5L from the general Australian population (N = 3013). Direct and indirect mapping methods were explored, including linear regression, Tobit, generalised linear model, censored regression model, beta regression (Betamix), the adjusted limited dependent variable mixture model (ALDVMM) and generalised ordered logit. The most robust model was selected by assessing the performance based on average ten-fold cross-validation geometric mean absolute error and geometric mean squared error, the predicted mean, maximum and minimum utilities, as well as the fitting across the entire distribution.ResultsThe direct approach using ALDVMM was considered the preferred model based on lowest geometric mean absolute error and geometric mean squared error in cross-validation (0.0882, 0.0299) and its superiority in predicting the actual observed mean, full health states and lower utility extremes. The robustness and precision in prediction across the entire distribution of utilities with ALDVMM suggest it is an accurate and valid mapping algorithm. Moreover, the suggested mapping algorithm outperformed previously published algorithms using Australian data, indicating the validity of this model for economic evaluations.ConclusionsThis study developed a robust algorithm to estimate EQ-5D-5L utilities from PROMIS-29. Consistent with the recent literature, the ALDVMM outperformed all other econometric models considered in this study, suggesting that the mixture models have relatively better performance and are an ideal candidate model for mapping.

Project description:PurposeTo analyze time to completion of preoperative legacy patient-reported outcomes (PROs) and more recent computer adaptive Patient-Reported Outcomes Measurement Information System (PROMIS) questionnaires in patients with symptomatic femoroacetabular impingement syndrome undergoing primary hip arthroscopy.MethodsA retrospective analysis was conducted on patients undergoing hip arthroscopy by a single fellowship-trained hip arthroscopist. Inclusion criteria were patients undergoing primary arthroscopic hip surgery and completion of at least 1 legacy PRO or PROMIS questionnaire at the preoperative time point. Exclusion criteria were history of contralateral or ipsilateral hip surgery, non-English-speaking patients, patients who completed PROs by phone or by paper form, and patients who did not complete preoperative PROs. Legacy PROs included modified Harris Hip Score (mHHS), Hip Outcome Score (HOS), International Hip Outcome Tool (iHOT-12), and Hip Pain Visual Analog Scale (VAS-Pain). PROMIS PROs included Physical Function (PROMIS-PF), Pain Interference (PROMIS-PI), and Depression (PROMIS-D). Only preoperative PROs were included in the analysis. Completion time was calculated using the questionnaire start and stop time reported by the survey collecting software. The median and interquartile range of each PRO were reported for analysis of central tendency and statistical dispersion, respectively.ResultsA total of 1,901 patients and 269 patients were included in the legacy and PROMIS groups, respectively. The median time required for completion of each PRO in (minutes: seconds) format was as follows: mHHS (1:29), HOS (3:58), iHOT (2:11), VAS-Pain (0:32), PROMIS-PF (0:46), PROMIS-PI (0:37), and PROMIS-D (0:43). The interquartile range of the middle 50% of respondents was as follows; mHHS (0:58), HOS (2:46), iHOT (1:22), VAS-Pain (0:28), PROMIS-PI (0:19), PROMIS-D (0:29), and PROMIS-PF (0:20).ConclusionsThis study supports that preoperative PROMIS forms require less time to complete than preoperative legacy PROs and are not significantly influenced by age, race, or workers compensation status.Level of evidenceLevel IV, case series.

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Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases.

Publications

Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases.

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