Advertisement

Pediatric Nephrology

, Volume 30, Issue 9, pp 1467–1476 | Cite as

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

  • David T. Selewski
  • Jonathan P. Troost
  • 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 Liu
  • Peter X. Song
  • Bryce B. Reeve
  • Darren A. DeWalt
  • Debbie S. Gipson
Original Article

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.

Keywords

Patient-reported outcomes Quality of life Nephrotic syndrome Pediatrics Children 

Notes

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

None.

Supplementary material

467_2015_3074_MOESM1_ESM.pdf (41 kb)
ESM 1 (PDF 40 kb)

References

  1. 1.
    Gipson DS, Massengill SF, Yao L, Nagaraj S, Smoyer WE, Mahan JD, Wigfall D, Miles P, Powell L, Lin JJ, Trachtman H, Greenbaum LA (2009) Management of childhood onset nephrotic syndrome. Pediatrics 124:747–757CrossRefPubMedGoogle Scholar
  2. 2.
    Ruth EM, Landolt MA, Neuhaus TJ, Kemper MJ (2004) Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome. J Pediatr 145:778–783CrossRefPubMedGoogle Scholar
  3. 3.
    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 JC, Leiser JD, Plattner BW, Song PX, Thissen D, Liu Y, Gross HE, DeWalt DA (2013) Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. Health Qual Life Outcomes 11:30PubMedCentralCrossRefPubMedGoogle Scholar
  4. 4.
    Gipson DS, Trachtman H, Kaskel FJ, Radeva MK, Gassman J, Greene TH, Moxey-Mims MM, Hogg RJ, Watkins SL, Fine RN, Middleton JP, Vehaskari VM, Hogan SL, Vento S, Flynn PA, Powell LM, McMahan JL, Siegel N, Friedman AL (2011) Clinical trials treating focal segmental glomerulosclerosis should measure patient quality of life. Kidney Int 79:678–685PubMedCentralCrossRefPubMedGoogle Scholar
  5. 5.
    Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, Ader D, Fries JF, Bruce B, Rose M (2007) The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care 45:S3–S11PubMedCentralCrossRefPubMedGoogle Scholar
  6. 6.
    Irwin DE, Stucky B, Langer MM, Thissen D, Dewitt EM, Lai JS, Varni JW, Yeatts K, DeWalt DA (2010) An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Qual Life Res 19:595–607PubMedCentralCrossRefPubMedGoogle Scholar
  7. 7.
    Yeatts KB, Stucky B, Thissen D, Irwin D, Varni JW, DeWitt EM, Lai JS, DeWalt DA (2010) Construction of the Pediatric Asthma Impact Scale (PAIS) for the Patient-Reported Outcomes Measurement Information System (PROMIS). J Asthma 47:295–302PubMedCentralCrossRefPubMedGoogle Scholar
  8. 8.
    Varni JW, Stucky BD, Thissen D, Dewitt EM, Irwin DE, Lai JS, Yeatts K, Dewalt DA (2010) PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain 11:1109–1119PubMedCentralCrossRefPubMedGoogle Scholar
  9. 9.
    Irwin DE, Stucky BD, Langer MM, Thissen D, DeWitt EM, Lai JS, Yeatts KB, Varni JW, DeWalt DA (2012) PROMIS Pediatric Anger Scale: an item response theory analysis. Qual Life Res 21:697–706PubMedCentralCrossRefPubMedGoogle Scholar
  10. 10.
    Irwin DE, Stucky BD, Thissen D, Dewitt EM, Lai JS, Yeatts K, Varni JW, DeWalt DA (2010) Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Qual Life Res 19:585–594PubMedCentralCrossRefPubMedGoogle Scholar
  11. 11.
    DeWitt EM, Stucky BD, Thissen D, Irwin DE, Langer M, Varni JW, Lai JS, Yeatts KB, Dewalt DA (2011) Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: built using item response theory. J Clin Epidemiol 64:794–804PubMedCentralCrossRefPubMedGoogle Scholar
  12. 12.
    Selewski DT, Collier DN, MacHardy J, Gross HE, Pickens EM, Cooper AW, Bullock S, Earls MF, Pratt KJ, Scanlon K, McNeill JD, Messer KL, Lu Y, Thissen D, DeWalt DA, Gipson DS (2013) Promising insights into the health related quality of life for children with severe obesity. Health Qual Life Outcomes 11:29PubMedCentralCrossRefPubMedGoogle Scholar
  13. 13.
    Hinds PS, Nuss SL, Ruccione KS, Withycombe JS, Jacobs S, DeLuca H, Faulkner C, Liu Y, Cheng YI, Gross HE, Wang J, DeWalt DA (2013) PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes. Pediatr Blood Cancer 60:402–408CrossRefPubMedGoogle Scholar
  14. 14.
    Selewski DT, Massengill SF, Troost JP, 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 JC, Leiser JD, Song PX, Thissen D, Liu Y, Gross HE, DeWalt DA, Gipson DS (2014) Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study. Pediatr Nephrol 29:2347–2356CrossRefPubMedGoogle Scholar
  15. 15.
    Varni JW, Limbers CA, Burwinkle TM (2007) How young can children reliably and validly self-report their health-related quality of life?: an analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 5:1PubMedCentralCrossRefPubMedGoogle Scholar
  16. 16.
    Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care 39:800–812CrossRefPubMedGoogle Scholar
  17. 17.
    Varni JW, Limbers CA, Burwinkle TM (2007) Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 generic core scales. Health Qual Life Outcomes 5:43PubMedCentralCrossRefPubMedGoogle Scholar
  18. 18.
    Varni JW, Burwinkle TM, Seid M, Skarr D (2003) The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 3:329–341CrossRefPubMedGoogle Scholar
  19. 19.
    Schwartz GJ, Munoz A, Schneider MF, Mak RH, Kaskel F, Warady BA, Furth SL (2009) New equations to estimate GFR in children with CKD. J Am Soc Nephrol 20:629–637PubMedCentralCrossRefPubMedGoogle Scholar
  20. 20.
    Liborio AB, Santos JP, Minete NF, Diogenes Cde A, Soares AP, Queiroz AL, Barreto DM (2012) Proteinuria is associated with quality of life and depression in adults with primary glomerulopathy and preserved renal function. PLoS One 7:e37763PubMedCentralCrossRefPubMedGoogle Scholar

Copyright information

© IPNA 2015

Authors and Affiliations

  • David T. Selewski
    • 1
  • Jonathan P. Troost
    • 1
  • Susan F. Massengill
    • 2
  • Rasheed A. Gbadegesin
    • 3
  • Larry A. Greenbaum
    • 4
  • Ibrahim F. Shatat
    • 5
  • Yi Cai
    • 6
  • Gaurav Kapur
    • 7
  • Diane Hebert
    • 8
  • Michael J. Somers
    • 9
  • Howard Trachtman
    • 10
  • Priya Pais
    • 11
  • Michael E. Seifert
    • 12
  • Jens Goebel
    • 13
  • Christine B. Sethna
    • 14
  • John D. Mahan
    • 15
  • Heather E. Gross
    • 16
  • Emily Herreshoff
    • 1
  • Yang Liu
    • 17
  • Peter X. Song
    • 18
  • Bryce B. Reeve
    • 16
  • Darren A. DeWalt
    • 16
  • Debbie S. Gipson
    • 1
  1. 1.Division of Nephrology, Department of Pediatrics and Communicable Diseases, C.S. Mott Children’s HospitalUniversity of MichiganAnn ArborUSA
  2. 2.Division of Pediatric NephrologyLevine Children’s HospitalCharlotteUSA
  3. 3.Division of Nephrology, Department of PediatricsDuke University Medical CenterDurhamUSA
  4. 4.Department of PediatricsEmory University and Children’s Healthcare of AtlantaAtlantaUSA
  5. 5.Pediatric Nephrology and HypertensionMedical University of South CarolinaCharlestonUSA
  6. 6.DeVos Children’s HospitalGrand RapidsUSA
  7. 7.Pediatric Nephrology and Hypertension DivisionChildren’s Hospital of MichiganDetroitUSA
  8. 8.Division of NephrologyThe Hospital for Sick ChildrenTorontoUSA
  9. 9.Division of NephrologyBoston Children’s Hospital–Harvard Medical SchoolBostonUSA
  10. 10.Division of Nephrology, Department of PediatricsNew York University–Langone Medical CenterNew YorkUSA
  11. 11.Pediatric Nephrology and HypertensionMedical College of WisconsinMilwaukeeUSA
  12. 12.Division of Pediatric Nephrology, Department of PediatricsWashington University at St. LouisSt. LouisUSA
  13. 13.Division of Nephrology and HypertensionCincinnati Children’s HospitalCincinnatiUSA
  14. 14.Division of Pediatric NephrologyCohen Children’s Medical Center of New YorkNew Hyde ParkUSA
  15. 15.Nationwide Children’s HospitalCollege of Medicine, The Ohio State UniversityColumbusUSA
  16. 16.University of North CarolinaChapel HillUSA
  17. 17.Department of PsychologyUniversity of North CarolinaChapel HillUSA
  18. 18.Department of Biostatistics, School of Public HealthUniversity of MichiganAnn ArborUSA

Personalised recommendations