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Validation of Patient‐Reported Outcomes Measurement Information System Short Forms for Use in Childhood‐Onset Systemic Lupus Erythematosus
Author(s) -
Jones Jordan T.,
Carle Adam C.,
Wootton Janet,
Liberio Brianna,
Lee Jiha,
Schanberg Laura E.,
Ying Jun,
Morgan DeWitt Esi,
Brunner Hermine I.
Publication year - 2017
Publication title -
arthritis care and research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 2.032
H-Index - 163
eISSN - 2151-4658
pISSN - 2151-464X
DOI - 10.1002/acr.22927
Subject(s) - patient reported outcomes measurement information system , medicine , quality of life (healthcare) , visual analogue scale , smiley , physical therapy , cohort , anxiety , population , psychometrics , computerized adaptive testing , clinical psychology , psychiatry , nursing , environmental health , computer science , operating system
Objective To validate the pediatric Patient‐Reported Outcomes Measurement Information System short forms (PROMIS‐SFs) in childhood‐onset systemic lupus erythematosus (SLE) in a clinical setting. Methods At 3 study visits, childhood‐onset SLE patients completed the PROMIS‐SFs (anger, anxiety, depressive symptoms, fatigue, physical function‐mobility, physical function‐upper extremity, pain interference, and peer relationships) using the PROMIS assessment center, and health‐related quality of life (HRQoL) legacy measures (Pediatric Quality of Life Inventory, Childhood Health Assessment Questionnaire, Simple Measure of Impact of Lupus Erythematosus in Youngsters [SMILEY], and visual analog scales [VAS] of pain and well‐being). Physicians rated childhood‐onset SLE activity on a VAS and completed the Systemic Lupus Erythematosus Disease Activity Index 2000. Using a global rating scale of change (GRC) between study visits, physicians rated change of childhood‐onset SLE activity (GRC‐MD1: better/same/worse) and change of patient overall health (GRC‐MD2: better/same/worse). Questionnaire scores were compared in support of validity and responsiveness to change (external standards: GRC‐MD1, GRC‐MD2). Results In this population‐based cohort (n = 100) with a mean age of 15.8 years (range 10–20 years), the PROMIS‐SFs were completed in less than 5 minutes in a clinical setting. The PROMIS‐SF scores correlated at least moderately (Pearson's r ≥ 0.5) with those of legacy HRQoL measures, except for the SMILEY. Measures of childhood‐onset SLE activity did not correlate with the PROMIS‐SFs. Responsiveness to change of the PROMIS‐SFs was supported by path, mixed‐model, and correlation analyses. Conclusion To assess HRQoL in childhood‐onset SLE, the PROMIS‐SFs demonstrated feasibility, internal consistency, construct validity, and responsiveness to change in a clinical setting.