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The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

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Abstract

Background

The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort.

Methods

This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit.

Results

The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p = 0.02) and PedsQL social functioning (p < 0.01).

Conclusion

The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument.

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Acknowledgments

The investigators are indebted to the children and families who graciously participated in this study.

The Patient-Reported Outcomes Measurement Information System® (PROMIS®) is an NIH Roadmap initiative to develop valid and reliable measures of patient-reported outcomes in individuals with a wide range of chronic diseases and demographic characteristics.

PROMIS II was funded by cooperative agreements with a Statistical Center (Northwestern University, PI: David Cella, PhD, 1U54AR057951), a Technology Center (Northwestern University, PI: Richard C. Gershon, PhD, 1U54AR057943), a Network Center [American Institutes for Research, PI: Susan (San) D. Keller, PhD, 1U54AR057926] and 13 Primary Research Sites which may include more than one institution [State University of New York, Stony Brook, PIs: Joan E. Broderick, PhD and Arthur A. Stone, PhD, 1U01AR057948; University of Washington, Seattle, PIs: Heidi M. Crane, MD, MPH, Paul K. Crane, MD, MPH, and Donald L. Patrick, PhD, 1U01AR057954; University of Washington, Seattle, PIs: Dagmar Amtmann, PhD and Karon Cook, PhD, 1U01AR052171; University of North Carolina, Chapel Hill, PI: Darren A. DeWalt, MD, MPH, 2U01AR052181; Children’s Hospital of Philadelphia, PI: Christopher B. Forrest, MD, PhD, 1U01AR057956; Stanford University, PI: James F. Fries, MD, 2U01AR052158; Boston University, PIs: Stephen M. Haley, PhD and David Scott Tulsky, PhD (University of Michigan, Ann Arbor), 1U01AR057929; University of California, Los Angeles, PIs: Dinesh Khanna, MD and Brennan Spiegel, MD, MSHS, 1U01AR057936; University of Pittsburgh, PI: Paul A. Pilkonis, PhD, 2U01AR052155; Georgetown University, PIs: Carol. M. Moinpour, PhD (Fred Hutchinson Cancer Research Center, Seattle) and Arnold L. Potosky, PhD, U01AR057971; Children’s Hospital Medical Center, Cincinnati, PI: Esi M. Morgan DeWitt, MD, MSCE, 1U01AR057940; University of Maryland, Baltimore, PI: Lisa M. Shulman, MD, 1U01AR057967; and Duke University, PI: Kevin P. Weinfurt, PhD, 2U01AR052186]. NIH Science Officers on this project have included Deborah Ader, PhD, Vanessa Ameen, MD, Susan Czajkowski, PhD, Basil Eldadah, MD, PhD, Lawrence Fine, MD, DrPH, Lawrence Fox, MD, PhD, Lynne Haverkos, MD, MPH, Thomas Hilton, PhD, Laura Lee Johnson, PhD, Michael Kozak, PhD, Peter Lyster, PhD, Donald Mattison, MD, Claudia Moy, PhD, Louis Quatrano, PhD, Bryce Reeve, PhD, William Riley, PhD, Ashley Wilder Smith, PhD, MPH, Susana Serrate-Sztein,MD, Ellen Werner, PhD and James Witter, MD, PhD. This manuscript was reviewed by PROMIS reviewers before submission for external peer review.

Conflicts of interest

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Authors and Affiliations

  1. Division 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

    David T. Selewski, Jonathan P. Troost, Emily Herreshoff & Debbie S. Gipson

  2. Division of Pediatric Nephrology, Levine Children’s Hospital, Charlotte, NC, USA

    Susan F. Massengill

  3. Division of Nephrology, Department of Pediatrics, Duke University Medical Center, Durham, NC, USA

    Rasheed A. Gbadegesin

  4. Department of Pediatrics, Emory University and Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Larry A. Greenbaum

  5. Pediatric Nephrology and Hypertension, Medical University of South Carolina, Charleston, SC, USA

    Ibrahim F. Shatat

  6. DeVos Children’s Hospital, Grand Rapids, MI, USA

    Yi Cai

  7. Pediatric Nephrology and Hypertension Division, Children’s Hospital of Michigan, Detroit, MI, USA

    Gaurav Kapur

  8. Division of Nephrology, The Hospital for Sick Children, Toronto, ON, USA

    Diane Hebert

  9. Division of Nephrology, Boston Children’s Hospital–Harvard Medical School, Boston, MA, USA

    Michael J. Somers

  10. Division of Nephrology, Department of Pediatrics, New York University–Langone Medical Center, New York, NY, USA

    Howard Trachtman

  11. Pediatric Nephrology and Hypertension, Medical College of Wisconsin, Milwaukee, WI, USA

    Priya Pais

  12. Division of Pediatric Nephrology, Department of Pediatrics, Washington University at St. Louis, St. Louis, MO, USA

    Michael E. Seifert

  13. Division of Nephrology and Hypertension, Cincinnati Children’s Hospital, Cincinnati, OH, USA

    Jens Goebel

  14. Division of Pediatric Nephrology, Cohen Children’s Medical Center of New York, New Hyde Park, NY, USA

    Christine B. Sethna

  15. Nationwide Children’s Hospital, College of Medicine, The Ohio State University, Columbus, OH, USA

    John D. Mahan

  16. University of North Carolina, Chapel Hill, NC, USA

    Heather E. Gross, Bryce B. Reeve & Darren A. DeWalt

  17. Department of Psychology, University of North Carolina, Chapel Hill, NC, USA

    Yang Liu

  18. Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI, USA

    Peter X. Song

Authors
  1. David T. Selewski
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  2. Jonathan P. Troost
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  3. Susan F. Massengill
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  4. Rasheed A. Gbadegesin
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  5. Larry A. Greenbaum
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  6. Ibrahim F. Shatat
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  7. Yi Cai
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  8. Gaurav Kapur
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  9. Diane Hebert
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  10. Michael J. Somers
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  11. Howard Trachtman
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  12. Priya Pais
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  13. Michael E. Seifert
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  14. Jens Goebel
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  15. Christine B. Sethna
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  16. John D. Mahan
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  17. Heather E. Gross
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  18. Emily Herreshoff
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  19. Yang Liu
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  20. Peter X. Song
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  21. Bryce B. Reeve
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  22. Darren A. DeWalt
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  23. Debbie S. Gipson
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Corresponding author

Correspondence to David T. Selewski.

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Selewski, D.T., Troost, J.P., Massengill, S.F. et al. The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study. Pediatr Nephrol 30, 1467–1476 (2015). https://doi.org/10.1007/s00467-015-3074-x

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  • DOI: https://doi.org/10.1007/s00467-015-3074-x

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