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.