Pediatric Nephrology

, Volume 24, Issue 8, pp 1561–1568 | Cite as

Quality of life of adolescents with end-stage renal disease and kidney transplant

  • Isolina Riaño-Galán
  • Serafín Málaga
  • Luis Rajmil
  • Gema Ariceta
  • Mercedes Navarro
  • Cesar Loris
  • Alfredo Vallo
Original Article


The health-related quality of life (HRQOL) of adolescents with end-stage renal disease (ESRD) is an important marker of disease burden. Our aims were to investigate HRQOL in a group of children and adolescents with ESRD and to compare them with the reference population norms. Ours was a cross-sectional study of 81 patients aged 10 years to 21 years with ESRD (68 with kidney transplants and 13 on dialysis) at five Spanish paediatric nephrology centres. HRQOL was investigated with the Spanish version of the child health and illness profile, adolescent edition (CHIP-AE). Clinical variables such as underlying diagnosis, number of rejection episodes, pre-emptive transplantation, anaemia and height were also analysed. No differences were found between patients with kidney transplants and their healthy peers in any domain or sub-domain of CHIP-AE. The group on dialysis scored lower than healthy controls and patients with transplants for satisfaction with health. Discomfort was higher in patients with transplants who had suffered one rejection episode. Physical discomfort was increased in anaemic patients with transplants. Short patients scored less in the satisfaction domain, with lower self-esteem and lower satisfaction with health. Adolescents with kidney transplants had better satisfaction with health than the group on dialysis, which matched the level of a healthy population. Further long-term prospective research is warranted.


Dialysis End-stage renal disease Health-related quality of life Kidney transplant Paediatric Teenagers 



The authors acknowledge Pilar Mosterio, Olga Somoano, Juana Garcia Peliz and Benito Amil for their assistance in the previous pilot study in Asturias; Victoria Serrá for assistance in the scoring and analysis of CHIP-AE data with reference population values; Jose Manuel Fernandez-Carreira and Blanca Mendez for statistical support; and Jorge Baluarte and Nataliya Zelikovsky for critical revision of the manuscript. The previous pilot study developed in Asturias was supported by the Ernesto Sánchez-Villares Foundation Grant (1999).


  1. 1.
    Sudan D, Bacha EA, John E, Bartholomew A (2007) What’s new in childhood organ transplantation. Pediatr Rev 28:439–453PubMedCrossRefGoogle Scholar
  2. 2.
    McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662PubMedCrossRefGoogle Scholar
  3. 3.
    Goldstein SL, Gerson AC, Furth S (2007) Health-related quality of life for children with chronic kidney disease. Adv Chronic Kidney Dis 14:364–369PubMedCrossRefGoogle Scholar
  4. 4.
    Barnes PM, Jenney MEM (2002) Measuring quality of life. Cur Pediatr 12:476–480CrossRefGoogle Scholar
  5. 5.
    Málaga S, Somoano O, Fernández F (1995) Problemática escolar en patología crónica. Arch Pediatr 46:90–94Google Scholar
  6. 6.
    Wallander JL, Varni JW (1998) Effects of paediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39:29–46PubMedCrossRefGoogle Scholar
  7. 7.
    Kirk S (1998) Families’ experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev 24:101–114PubMedCrossRefGoogle Scholar
  8. 8.
    Cameron JI, Whiteside C, Katz J, Devins GM (2000) Differences in quality of life across renal replacement therapies: a meta-analytic comparison. Am J Kidney Dis 35:629–637PubMedCrossRefGoogle Scholar
  9. 9.
    Valderrábano F, Jofre R, López-Gómez JM (2001) Quality of life in end-stage renal disease patients. Am J Kidney Dis 38:443–464PubMedCrossRefGoogle Scholar
  10. 10.
    Rebollo P, Ortega F, Baltar JM, Badía X, Alvarez-Ude F, Díaz-Corte C, Naves M, Navascúes RA, Ureña A, Alvarez-Grande J (2000) Health related quality of life (HRQOL) of kidney transplanted patients: variables that influence it. Clin Transplant 14:199–207PubMedCrossRefGoogle Scholar
  11. 11.
    Dobbels F, De Bleser L, De Geest S, Fine RN (2007) Quality of life after kidney transplantation: the bright side of life? Adv Chronic Kidney Dis 14:370–378PubMedCrossRefGoogle Scholar
  12. 12.
    Gerson A, Riley A, Fivush BA, Pham N, Fiorenza J, Robertson J, Chandra M, Trachtman H, Weiss R, Furth SL (2005) Assessing health status and health care utilization in adolescents with chronic kidney disease. J Am Soc Nephrol 16:1427–1432PubMedCrossRefGoogle Scholar
  13. 13.
    McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF (2006) Quality of life in children with chronic kidney disease—patient and caregiver assessments. Nephrol Dial Transplant 21:1899–1905PubMedCrossRefGoogle Scholar
  14. 14.
    Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health related quality of life in pediatric patients with ESRD. Pediatr Nephrol 21:846–850PubMedCrossRefGoogle Scholar
  15. 15.
    Hernández M, Castellet J, Narvaiza JL, Rincón JM, Ruíz I, Sánchez E, Sobradillo B, Zurimendi A (1988) Estudio longitudinal de crecimiento. Curvas de 0 a 18 años. Instituto de Investigación sobre crecimiento y desarrollo. Fundación F. Orbegozo. Ed. Garsi, MadridGoogle Scholar
  16. 16.
    Registro Pediátrico Español de Insuficiencia Renal (REPIR) (2007) Annual Report. XXXIII Congreso Español de Nefrología Pediátrica. Calatayud (España)Google Scholar
  17. 17.
    Starfield B, Ensminger M, Riley A, McGauhey P, Skinner A, Kim S, Bergner M, Ryan S, Green B (1993) Adolescent health status measurement: development of the child health and illness profile. Pediatrics 91:430–435PubMedGoogle Scholar
  18. 18.
    Rajmil L, Serra-Sutton V, Alonso J, Starfield B, Riley AW, Vázquez JR, Research Group for the Spanish Version of the CHIP-AE (2003) The Spanish version of the child health and illness profile-adolescent edition (CHIP-AE). Qual Life Res 12:303–313PubMedCrossRefGoogle Scholar
  19. 19.
    Riley AW, Forrest CB, Starfield B, Green B, Kang M, Ensminger M (1998) Reliability and validity of the adolescent health profile-types. Med Care 36:1237–1248PubMedCrossRefGoogle Scholar
  20. 20.
    Starfield B, Riley AW, Witt WP, Robertson J (2002) Social class gradients in health during adolescence. J Epidemiol Community Health 56:354–361PubMedCrossRefGoogle Scholar
  21. 21.
    Serra-Sutton V, Rajmil L, Alonso J, Riley A, Starfield B (2003) Valores poblacionales de referencia del perfil de salud CHIP-AE a partir de una muestra representativa de adolescentes escolarizados. Gac Sanit 17:181–189PubMedCrossRefGoogle Scholar
  22. 22.
    de Castro EK, Moreno-Jimenez B, Rodríguez-Carvajal R (2007) Psychological well-being in adults transplanted in childhood. Pediatr Transplant 11:272–278PubMedCrossRefGoogle Scholar
  23. 23.
    Fadrowski J, Cole SR, Hwang W, Fiorenza J, Weiss RA, Gerson A, Furth SL (2006) Changes in physical and psychosocial functioning among adolescents with chronic kidney disease. Pediatr Nephrol 21:394–399PubMedCrossRefGoogle Scholar
  24. 24.
    Fine RN, Ho M, Tejani A (2001) The contribution of renal transplantation to final adult height: a report of the North American Pediatric Renal Transplant Cooperative Study (NAPRTCS). Pediatr Nephrol 16:951–956PubMedCrossRefGoogle Scholar
  25. 25.
    Gerson A, Hwang W, Fiorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth SL (2004) Anemia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 44:1017–1023PubMedCrossRefGoogle Scholar
  26. 26.
    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 19:1262–1266PubMedCrossRefGoogle Scholar
  27. 27.
    Schröder CH, The European Pediatric Peritoneal Dialysis Working Group (2003) The management of anemia in pediatric peritoneal dialysis patients. Guidelines by an ad hoc European committee. Pediatr Nephrol 18:805–809PubMedCrossRefGoogle Scholar
  28. 28.
    Gillespie RS, Wolf FM (2004) Intravenous iron therapy in pediatric hemodialysis patients: a meta-analysis. Pediatr Nephrol 19:662–666PubMedCrossRefGoogle Scholar
  29. 29.
    Dodson JL, Diener-West M, Gerson AC, Kaskel FJ, Furth SL (2007) An assessment of health related quality of life using the child health and illness profile-adolescent edition in adolescents with chronic kidney disease due to underlying urological disorders. J Urol 178:660–665PubMedCrossRefGoogle Scholar
  30. 30.
    Revicki DA, Cella D, Hays RD, Sloan JA, Lenderking WR, Aaronson NK (2006) Responsiveness and minimal important differences for patient reported outcomes. Health Qual Life Outcomes 4:70–74PubMedCrossRefGoogle Scholar
  31. 31.
    Guyatt G, Schunemann H (2007) How can quality of life researchers make their work more useful to health workers and their patients? Qual Life Res 16:1097–1105PubMedCrossRefGoogle Scholar
  32. 32.
    Webb NJA, Johnson R, Postlethwaite RJ (2003) Renal transplantation. Arch Dis Child 88:844–847PubMedCrossRefGoogle Scholar
  33. 33.
    Harada H, Seki T, Nonomura K, Chikaraishi T, Takeuchi I, Morita K, Usuki T, Watarai Y, Togashi M, Hirano T, Koyanagi T (2001) Pre-emptive renal transplantation in children. Int J Urol 8:205–211PubMedCrossRefGoogle Scholar
  34. 34.
    Rebollo P, Ortega F, Ortega T, Valdés C, García-Mendoza M, Gómez E (2003) Spanish validation of the kidney transplant questionnaire: a useful instrument for assessing health related quality of life in kidney transplant patients. Health Qual Life Outcomes 1:56–65PubMedCrossRefGoogle Scholar
  35. 35.
    Goldstein S, Graham N, Warady B, Seikaly M, McDonald R, Burwinkle T, Limbers C, Varni JW (2008) Measuring health-related quality of life in children with ESRD: performance of the generic and ESRD-specific instrument of the paediatric quality of life inventory (PedsQL). Am J Kidney Dis 51:285–297PubMedCrossRefGoogle Scholar
  36. 36.
    von Rueden U, Gosch A, Rajmil L, Bisegger C, Ravens-Sieberer U, The European KIDSCREEN Group (2006) Socioeconomic determinants of health related quality of life in childhood and adolescence: results from a European study. J Epidemiol Community Health 60:130–135PubMedCrossRefGoogle Scholar
  37. 37.
    Kalantar-Zadeh K, Unruh M (2005) Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol 37:367–378PubMedCrossRefGoogle Scholar
  38. 38.
    Kimmel PL, Patel SS (2006) Quality of life in patients with chronic kidney disease: focus on end-stage renal disease treated with hemodialysis. Semin Nephrol 26:68–79PubMedCrossRefGoogle Scholar
  39. 39.
    Perlman RL, Finkelstein FO, Liu L, Roys E, Kiser M, Eisele G, Burrows-Hudson S, Messana JM, Levin N, Rajagopalan S, Port FK, Wolfe RA, Saran R (2005) Quality of life in chronic kidney disease (CKD): a cross-sectional analysis in the renal research institute-CKD study. Am J Kidney Dis 45:658–666PubMedCrossRefGoogle Scholar
  40. 40.
    Erling A (1999) Methodological considerations in the assessment of health-related quality of life in children. Acta Pediatr Suppl 428:106–168CrossRefGoogle Scholar
  41. 41.
    Gipson DS, Ferris ME (2004) A measure of success in kidney transplantations. Pediatr Transplant 8:104–105PubMedCrossRefGoogle Scholar
  42. 42.
    Müller D, Zimmering M, Chan CT, McFarlane PA, Pierratos A, Querfeld U (2008) Intensified hemodialysis regimens: neglected treatment options for children and adolescents. Pediatr Nephrol 23:1729–1736PubMedCrossRefGoogle Scholar
  43. 43.
    Rajmil L, Serra-Sutton V, Alonso J, Starfield B, Riley A (2002) Manual. Version española y catalana del perfil de salud de adolescentes (CHIP-AE) Agencia d’Avaluació de Tecnologia i Recerca Mediques, BarcelonaGoogle Scholar

Copyright information

© IPNA 2009

Authors and Affiliations

  • Isolina Riaño-Galán
    • 1
  • Serafín Málaga
    • 2
  • Luis Rajmil
    • 3
  • Gema Ariceta
    • 4
  • Mercedes Navarro
    • 5
  • Cesar Loris
    • 6
  • Alfredo Vallo
    • 7
  1. 1.Division of PaediatricsHospital San AgustínAvilésSpain
  2. 2.Division of Paediatric NephrologyHospital Universitario Central de AsturiasOviedoSpain
  3. 3.Agència d’Avaluació de Tecnologia i Recerca Mèdiques (AATRM)Institut Municipal d’Investigació Mèdica (IMIM) and CIBER en Epidemiología y Salud Pública (CIBERESP)BarcelonaSpain
  4. 4.Division of Paediatric NephrologyHospital Clínico de SantiagoSantiago de CompostelaSpain
  5. 5.Division of Paediatric NephrologyHospital Universitario Infantil La PazMadridSpain
  6. 6.Division of Paediatric NephrologyHospital Miguel ServetZaragozaSpain
  7. 7.Division of Paediatric NephrologyHospital CrucesBilbaoSpain

Personalised recommendations