Responsiveness of the PROMIS® measures to changes in disease status among pediatric nephrotic syndrome patients: A Midwest pediatric nephrology consortium study

David T. Selewski, Jonathan P. Troost, Danyelle Cummings, Susan F. Massengill, Rasheed A. Gbadegesin, Larry A. Greenbaum, Ibrahim F. Shatat, Yi Cai, Gaurav Kapur, Diane Hebert, Michael J. Somers, Howard Trachtman, Priya Pais, Michael E. Seifert, Jens Goebel, Christine B. Sethna, John D. Mahan, Heather E. Gross, Emily Herreshoff, Yang LiuNoelle E. Carlozzi, Bryce B. Reeve, Darren A. DeWalt, Debbie S. Gipson

Research output: Contribution to journalArticlepeer-review

11 Scopus citations

Abstract

Background: Nephrotic syndrome represents a condition in pediatric nephrology typified by a relapsing and remitting course, proteinuria and the presence of edema. The PROMIS measures have previously been studied and validated in cross-sectional studies of children with nephrotic syndrome. This study was designed to longitudinally validate the PROMIS measures in pediatric nephrotic syndrome. Methods: One hundred twenty seven children with nephrotic syndrome between the ages of 8 and 17years participated in this prospective cohort study. Patients completed a baseline assessment while their nephrotic syndrome was active, a follow-up assessment at the time of their first complete proteinuria remission or study month 3 if no remission occurred, and a final assessment at study month 12. Participants completed six PROMIS measures (Mobility, Fatigue, Pain Interference, Depressive Symptoms, Anxiety, and Peer Relationships), the PedsQL version 4.0, and two global assessment of change items. Results: Disease status was classified at each assessment: nephrotic syndrome active in 100% at baseline, 33% at month 3, and 46% at month 12. The PROMIS domains of Mobility, Fatigue, Pain Interference, Depressive Symptoms, and Anxiety each showed a significant overall improvement over time (p<0.001). When the PROMIS measures were compared to the patients' global assessment of change, the domains of Mobility, Fatigue, Pain Interference, and Anxiety consistently changed in an expected fashion. With the exception of Pain Interference, change in PROMIS domain scores did not correlate with changes in disease activity. PROMIS domain scores were moderately correlated with analogous PedsQL domain scores. Conclusion: This study demonstrates that the PROMIS Mobility, Fatigue, Pain Interference, and Anxiety domains are sensitive to self-reported changes in disease and overall health status over time in children with nephrotic syndrome. The lack of significant anchoring to clinically defined nephrotic syndrome disease active and remission status may highlight an opportunity to improve the measurement of HRQOL in children with nephrotic syndrome through the development of a nephrotic syndrome disease-specific HRQOL measure.

Original languageEnglish
Article number166
JournalHealth and Quality of Life Outcomes
Volume15
Issue number1
DOIs
StatePublished - Aug 23 2017

Keywords

  • Children
  • Nephrotic syndrome
  • Patient-reported outcomes
  • Pediatrics
  • Quality of life

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