Pediatric Nephrology

, Volume 21, Issue 6, pp 846–850 | Cite as

Health-related quality of life in pediatric patients with ESRD

  • Stuart L. GoldsteinEmail author
  • Nicole Graham
  • Tasha Burwinkle
  • Bradley Warady
  • Rhonda Farrah
  • James W. Varni
Original Article


As part of creating a pediatric ESRD-specific Health-Related Quality of Life (HRQOL) assessment instrument, we established pilot data with the PedsQL 4.0 Generic Core Scales in 96 pediatric patients with ESRD receiving hemodialysis (HD), peritoneal dialysis (PD) or with a renal transplant (TX). Patient age ranges were: 2–4 (8; PD n=3, TX n=5), 5–7 (12; HD n=9, TX n=3), 8–12 (25; HD n=5, PD n=6, TX n=14), 13–18 (51; HD n=18, PD n=10, TX n=23). PedsQL ESRD data were compared to healthy children (n=131 child report; n=145 parent report) and across HD/PD/TX. For all domains, ESRD patient HRQOL scores were significantly lower than healthy controls. Transplant patients reported better physical and psychosocial health than dialysis patients. No difference was noted between HD and PD patients for any PedsQL domain. Our data demonstrate that the PedsQL 4.0 Generic Core Scales is a useful measurement instrument to screen for HRQOL impairment in pediatric patients with ESRD. We suggest that the ESRD-specific HRQOL instrument in development is needed to help define condition-specific HRQOL differences between modalities.


Children Chronic kidney disease Health related quality of life 



The manuscript is dedicated to the memory of Rhonda Farrah, RN, whose commitment to the project was essential to its successful completion.

This work was supported by the Franklin McDonald/Fresenius Medical Care Clinical Research Award of the National Kidney Foundation.


  1. 1.
    Combe C, McCullough KP, Asano Y, Ginsberg N, Maroni BJ, Pifer TB (2004) Kidney Disease Outcomes Quality Initiative (K/DOQI) and the Dialysis Outcomes and Practice Patterns Study (DOPPS): nutrition guidelines, indicators, and practices. Am J Kidney Dis 44:39–46CrossRefGoogle Scholar
  2. 2.
    Goldstein SL, Baronette S, Gambrell TV, Currier H, Brewer ED (2002) nPCR assessment and IDPN treatment of malnutrition in pediatric hemodialysis patients. Pediatr Nephrol 17:531–534CrossRefGoogle Scholar
  3. 3.
    Macdougall IC, Chandler G, Elston O, Harchowal J (1999) Beneficial effects of adopting an aggressive intravenous iron policy in a hemodialysis unit. Am J Kidney Dis 34:S40–S46CrossRefGoogle Scholar
  4. 4.
    Painter P, Moore G, Carlson L, Paul S, Myll J, Phillips W, Haskell W (2002) Effects of exercise training plus normalization of hematocrit on exercise capacity and health-related quality of life. Am J Kidney Dis 39:257–265CrossRefGoogle Scholar
  5. 5.
    Johansen KL, Painter P, Kent-Braun JA, Ng AV, Carey S, Da Silva M, Chertow GM (2001) Validation of questionnaires to estimate physical activity and functioning in end-stage renal disease. Kidney Int 59:1121–1127CrossRefGoogle Scholar
  6. 6.
    Valderrabano F (2000) Quality of life benefits of early anaemia treatment. Nephrol Dial Transplant 15(Suppl 3):23–28CrossRefGoogle Scholar
  7. 7.
    Diaz-Buxo JA, Lowrie EG, Lew NL, Zhang H, Lazarus JM (2000) Quality-of-life evaluation using short form 36: comparison in hemodialysis and peritoneal dialysis patients. Am J Kidney Dis 35:293–300CrossRefGoogle Scholar
  8. 8.
    Fujisawa M, Ichikawa Y, Yoshiya K, Isotani S, Higuchi A, Nagano S, Arakawa S, Hamami G, Matsumoto O, Kamidono S (2000) Assessment of health-related quality of life in renal transplant and hemodialysis patients using the SF-36 health survey. Urology 56:201–206CrossRefGoogle Scholar
  9. 9.
    Gerson A, Hwang W, Fiorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth S (2004) Anemia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 44:1017–1023CrossRefGoogle Scholar
  10. 10.
    Eijsermans RM, Creemers DG, Helders PJ, Schroder CH (2004) Motor performance, exercise tolerance, and health-related quality of life in children on dialysis. Pediatr Nephrol 19:1262–1266CrossRefGoogle Scholar
  11. 11.
    Fielding D, Brownbridge G (1999) Factors related to psychosocial adjustment in children with end-stage renal failure. Pediatr Nephrol 13:766–770CrossRefGoogle Scholar
  12. 12.
    Brownbridge G, Fielding DM (1994) Psychosocial adjustment and adherence to dialysis treatment regimes. Pediatr Nephrol 8:744–749CrossRefGoogle Scholar
  13. 13.
    Brownbridge G, Fielding DM (1991) Psychosocial adjustment to end-stage renal failure: comparing haemodialysis, continuous ambulatory peritoneal dialysis and transplantation. Pediatr Nephrol 5:612–616CrossRefGoogle Scholar
  14. 14.
    Fukunishi I, Honda M (1995) School adjustment of children with end-stage renal disease. Pediatr Nephrol 9:553–557CrossRefGoogle Scholar
  15. 15.
    Fukunishi I, Kudo H (1995) Psychiatric problems of pediatric end-stage renal failure. Gen Hosp Psychiatry 17:32–36CrossRefGoogle 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 39:800–812CrossRefGoogle Scholar
  17. 17.
    Varni JW, Seid M, Knight TS, Uzark K, Szer IS (2002) The PedsQL 4.0 generic core scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 25:175–193CrossRefGoogle 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 3:329–341CrossRefGoogle Scholar
  19. 19.
    Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) The PedsQL in pediatric cancer: reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer 94:2090–2106CrossRefGoogle Scholar
  20. 20.
    Fennell RS 3rd, Rasbury WC, Fennell EB, Morris MK (1984) Effects of kidney transplantation on cognitive performance in a pediatric population. Pediatrics 74:273–278PubMedGoogle Scholar

Copyright information

© IPNA 2006

Authors and Affiliations

  • Stuart L. Goldstein
    • 1
    Email author
  • Nicole Graham
    • 1
  • Tasha Burwinkle
    • 2
  • Bradley Warady
    • 3
  • Rhonda Farrah
    • 3
  • James W. Varni
    • 4
    • 5
  1. 1.Texas Children’s HospitalHoustonUSA
  2. 2.University of WashingtonWashingtonUSA
  3. 3.Children’s Mercy Hospital and ClinicsKansasUSA
  4. 4.Department of PediatricsCollege of MedicineTexasUSA
  5. 5.Department of Landscape Architecture and Urban Planning, College of ArchitectureTexas A&M UniversityTexasUSA

Personalised recommendations