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

Debbie S Gipson1, David T Selewski, Susan F Massengill

  • 1Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children's Hospital, University of Michigan, 1500 E Medical Center Drive, SPC5297, Ann Arbor, MI 48109-5297, USA.

Health and Quality of Life Outcomes
|March 21, 2013
PubMed

Insights

Children with nephrotic syndrome (NS) can successfully complete the PROMIS computer assessment. This tool effectively identifies differences in anxiety, pain, fatigue, and mobility between active and inactive NS, aiding in quality of life assessments.

Area of Science:

  • Pediatric Nephrology
  • Health-Related Quality of Life
  • Patient-Reported Outcomes

Background:

  • Nephrotic syndrome (NS) is a common pediatric kidney disease with a relapsing-remitting course.
  • Edema in NS significantly impacts the quality of life for children and adolescents.
  • The PROMIS pediatric measures offer a valid, reliable way to assess patient-reported outcomes.

Purpose of the Study:

  • To evaluate the feasibility of children and adolescents with NS completing the PROMIS assessment via computer.
  • To assess the validity of PROMIS short forms and full item banks in pediatric NS.
  • To understand the impact of NS on children's quality of life through patient-reported outcomes.

Main Methods:

  • A cross-sectional study of 151 children and adolescents (8-17 years) with NS.
  • Participants completed web-based PROMIS pediatric measures for depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, and upper extremity functioning.
  • Responses were compared between active NS (edema present) and inactive NS (edema absent) groups.

Main Results:

  • All participants successfully completed the computer-based PROMIS assessment.
  • Children with active NS reported significantly higher anxiety, pain interference, fatigue, and lower mobility compared to those with inactive NS.
  • PROMIS instruments demonstrated sensitivity to NS disease activity, even after adjusting for demographics.

Conclusions:

  • The PROMIS pediatric measures are feasible for children and adolescents with NS using a web-based interface.
  • Computer-based PROMIS effectively differentiates between active and inactive NS based on patient-reported outcomes.
  • This study confirms the known-group validity and feasibility of PROMIS for assessing quality of life in pediatric NS.
Abstract

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