Faculty Collaboration Database

Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. Health Qual Life Outcomes 2013 Mar 04;11:30

Date

03/21/2013

Pubmed ID

23510630

Pubmed Central ID

PMC3599189

DOI

10.1186/1477-7525-11-30

Scopus ID

2-s2.0-84874433773 (requires institutional sign-in at Scopus site)   44 Citations

Abstract

BACKGROUND AND OBJECTIVES: Nephrotic syndrome (NS) represents a common disease in pediatric nephrology typified by a relapsing and remitting course and characterized by the presence of edema that can significantly affect the health-related quality of life in children and adolescents. The PROMIS pediatric measures were constructed to be publically available, efficient, precise, and valid across a variety of diseases to assess patient reports of symptoms and quality of life. This study was designed to evaluate the ability of children and adolescents with NS to complete the PROMIS assessment via computer and to initiate validity assessments of the short forms and full item banks in pediatric NS. Successful measurement of patient reported outcomes will contribute to our understanding of the impact of NS on children and adolescents.

DESIGN: This cross-sectional study included 151 children and adolescents 8-17 years old with NS from 16 participating institutions in North America. The children completed the PROMIS pediatric depression, anxiety, social-peer relationships, pain interference, fatigue, mobility and upper extremity functioning measures using a web-based interface. Responses were compared between patients experiencing active NS (n = 53) defined by the presence of edema and patients with inactive NS (n = 96) defined by the absence of edema.

RESULTS: All 151 children and adolescents were successfully able to complete the PROMIS assessment via computer. As hypothesized, the children and adolescents with active NS were significantly different on 4 self-reported measures (anxiety, pain interference, fatigue, and mobility). Depression, peer relationships, and upper extremity functioning were not different between children with active vs. inactive NS. Multivariate analysis showed that the PROMIS instruments remained sensitive to NS disease activity after adjusting for demographic characteristics.

CONCLUSIONS: Children and adolescents with NS were able to successfully complete the PROMIS instrument using a web-based interface. The computer based pediatric PROMIS measurement effectively discriminated between children and adolescents with active and inactive NS. The domain scores found in this study are consistent with previous reports investigating the health-related quality of life in children and adolescents with NS. This study establishes known-group validity and feasibility for PROMIS pediatric measures in children and adolescents with NS.

Author List

Gipson DS, Selewski DT, Massengill SF, Wickman L, Messer KL, Herreshoff E, Bowers C, Ferris ME, Mahan JD, Greenbaum LA, MacHardy J, Kapur G, Chand DH, Goebel J, Barletta GM, Geary D, Kershaw DB, Pan CG, Gbadegesin R, Hidalgo G, Lane JC, Leiser JD, Plattner BW, Song PX, Thissen D, Liu Y, Gross HE, DeWalt DA

Author

Cynthia G. Pan MD Adjunct Professor in the Pediatrics department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adolescent
Child
Cross-Sectional Studies
Female
Humans
Male
Midwestern United States
Nephrotic Syndrome
Quality of Life
Reproducibility of Results
Self Report
Surveys and Questionnaires