Validation of Patient-Reported Outcomes Measurement Information System Short Forms for Use in Childhood-Onset Systemic Lupus Erythematosus.
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.



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).



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.



To assess HRQoL in childhood-onset SLE, the PROMIS-SFs demonstrated feasibility, internal consistency, construct validity, and responsiveness to change in a clinical setting.
University of Missouri-Kansas City and Children's Mercy Hospitals and Clinics, Kansas City, and University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Jordan T
JT
Jones
University of Cincinnati College of Medicine, Cincinnati Children's Hospital Medical Center, and College of Arts and Sciences, Cincinnati, Ohio.
Adam C
AC
Carle
Duke University Medical Center, Durham, North Carolina.
Janet
J
Wootton
University of Cincinnati College of Medicine, Cincinnati, Ohio.
Brianna
B
Liberio
University of Cincinnati College of Medicine, Cincinnati, Ohio.
Jiha
J
Lee
Duke University Medical Center, Durham, North Carolina.
Laura E
LE
Schanberg
University of Cincinnati College of Medicine, Cincinnati, Ohio.
Jun
J
Ying
University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Esi
E
Morgan DeWitt
University of Cincinnati College of Medicine and Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Hermine I
HI
Brunner
D000293:Adolescent; D002648:Child; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008180:Lupus Erythematosus, Systemic; D008297:Male; D000071066:Patient Reported Outcome Measures; D011795:Surveys and Questionnaires; D055815:Young Adult