Abstract
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.
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Sudan D, Bacha EA, John E, Bartholomew A (2007) What’s new in childhood organ transplantation. Pediatr Rev 28:439–453
McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662
Goldstein SL, Gerson AC, Furth S (2007) Health-related quality of life for children with chronic kidney disease. Adv Chronic Kidney Dis 14:364–369
Barnes PM, Jenney MEM (2002) Measuring quality of life. Cur Pediatr 12:476–480
Málaga S, Somoano O, Fernández F (1995) Problemática escolar en patología crónica. Arch Pediatr 46:90–94
Wallander JL, Varni JW (1998) Effects of paediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39:29–46
Kirk S (1998) Families’ experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev 24:101–114
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 35:629–637
Valderrábano F, Jofre R, López-Gómez JM (2001) Quality of life in end-stage renal disease patients. Am J Kidney Dis 38:443–464
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 14:199–207
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 14:370–378
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 16:1427–1432
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 21:1899–1905
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 21:846–850
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, Madrid
Registro Pediátrico Español de Insuficiencia Renal (REPIR) (2007) Annual Report. XXXIII Congreso Español de Nefrología Pediátrica. Calatayud (España)
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 91:430–435
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 12:303–313
Riley AW, Forrest CB, Starfield B, Green B, Kang M, Ensminger M (1998) Reliability and validity of the adolescent health profile-types. Med Care 36:1237–1248
Starfield B, Riley AW, Witt WP, Robertson J (2002) Social class gradients in health during adolescence. J Epidemiol Community Health 56:354–361
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 17:181–189
de Castro EK, Moreno-Jimenez B, Rodríguez-Carvajal R (2007) Psychological well-being in adults transplanted in childhood. Pediatr Transplant 11:272–278
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 21:394–399
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 16:951–956
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 44:1017–1023
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 19:1262–1266
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 18:805–809
Gillespie RS, Wolf FM (2004) Intravenous iron therapy in pediatric hemodialysis patients: a meta-analysis. Pediatr Nephrol 19:662–666
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 178:660–665
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 4:70–74
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 16:1097–1105
Webb NJA, Johnson R, Postlethwaite RJ (2003) Renal transplantation. Arch Dis Child 88:844–847
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 8:205–211
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 1:56–65
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 51:285–297
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 60:130–135
Kalantar-Zadeh K, Unruh M (2005) Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol 37:367–378
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 26:68–79
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 45:658–666
Erling A (1999) Methodological considerations in the assessment of health-related quality of life in children. Acta Pediatr Suppl 428:106–168
Gipson DS, Ferris ME (2004) A measure of success in kidney transplantations. Pediatr Transplant 8:104–105
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 23:1729–1736
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, Barcelona
Acknowledgements
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).
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The work was carried out at the Divisions of Paediatric Nephrology of the following hospitals in Spain: Central de Asturias (Oviedo), Clínico de Santiago, Infantil La Paz (Madrid), Miguel Servet (Zaragoza) and Cruces (Bilbao)
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Riaño-Galán, I., Málaga, S., Rajmil, L. et al. Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatr Nephrol 24, 1561–1568 (2009). https://doi.org/10.1007/s00467-009-1175-0
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DOI: https://doi.org/10.1007/s00467-009-1175-0