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Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study.

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.

journal_name

Health Qual Life Outcomes

journal_title

Health and quality of life outcomes

authors

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

doi

10.1186/1477-7525-11-30

subject

Has Abstract

pub_date

2013-03-04 00:00:00

pages

issn

1477-7525

pii

1477-7525-11-30

journal_volume

pub_type

杂志文章,多中心研究

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Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study.