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- Title
Establishing clinical meaning and defining important differences for Patient-Reported Outcomes Measurement Information System (PROMIS<sup>®</sup>) measures in juvenile idiopathic arthritis using standard setting with patients, parents, and providers.
- Authors
Morgan, Esi; Mara, Constance; Huang, Bin; Barnett, Kimberly; Carle, Adam; Farrell, Jennifer; Cook, Karon; Morgan, Esi M; Mara, Constance A; Carle, Adam C; Farrell, Jennifer E; Cook, Karon F
- Abstract
<bold>Background: </bold>Patient-Reported Outcomes Measurement Information System (PROMIS) measures are used increasingly in clinical care. However, for juvenile idiopathic arthritis (JIA), scores lack a framework for interpretation of clinical severity, and minimally important differences (MID) have not been established, which are necessary to evaluate the importance of change.<bold>Methods: </bold>We identified clinical severity thresholds for pediatric PROMIS measures of mobility, upper extremity function (UE), fatigue, and pain interference working with adolescents with JIA, parents of JIA patients, and clinicians, using a standard setting methodology modified from educational testing. Item parameters were used to develop clinical vignettes across a range of symptom severity. Vignettes were ordered by severity, and panelists identified adjacent vignettes considered to represent upper and lower boundaries separating category cut-points (i.e., from none/mild problems to moderate/severe). To define MIDs, panelists reviewed a full score report for the vignettes and indicated which items would need to change and by how much to represent "just enough improvement to make a difference."<bold>Results: </bold>For fatigue and UE, cut-points among panels were within 0.5 SD of each other. For mobility and pain interference, cut-scores among panels were more divergent, with parents setting the lowest cut-scores for increasing severity. The size of MIDs varied by stakeholders (parents estimated largest, followed by patients, then clinicians). MIDs also varied by severity classification of the symptom.<bold>Conclusions: </bold>We estimated clinically relevant severity cut-points and MIDs for PROMIS measures for JIA from the perspectives of multiple stakeholders and found notable differences in perspectives.
- Subjects
JUVENILE idiopathic arthritis; PATIENTS' families; ARM physiology; EDUCATIONAL testing services; STAKEHOLDERS; MEDICAL personnel; PARENTS; PATIENTS; PSYCHOMETRICS; RESEARCH funding; SICKNESS Impact Profile; PSYCHOLOGY
- Publication
Quality of Life Research, 2017, Vol 26, Issue 3, p565
- ISSN
0962-9343
- Publication type
journal article
- DOI
10.1007/s11136-016-1468-2