Skip to main content
Top
Published in: Pediatric Nephrology 8/2009

01-08-2009 | Original Article

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

Authors: Isolina Riaño-Galán, Serafín Málaga, Luis Rajmil, Gema Ariceta, Mercedes Navarro, Cesar Loris, Alfredo Vallo

Published in: Pediatric Nephrology | Issue 8/2009

Login to get access

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.
Literature
1.
go back to reference Sudan D, Bacha EA, John E, Bartholomew A (2007) What’s new in childhood organ transplantation. Pediatr Rev 28:439–453CrossRef Sudan D, Bacha EA, John E, Bartholomew A (2007) What’s new in childhood organ transplantation. Pediatr Rev 28:439–453CrossRef
2.
go back to reference McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662CrossRef McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662CrossRef
3.
go back to reference Goldstein SL, Gerson AC, Furth S (2007) Health-related quality of life for children with chronic kidney disease. Adv Chronic Kidney Dis 14:364–369CrossRef Goldstein SL, Gerson AC, Furth S (2007) Health-related quality of life for children with chronic kidney disease. Adv Chronic Kidney Dis 14:364–369CrossRef
4.
go back to reference Barnes PM, Jenney MEM (2002) Measuring quality of life. Cur Pediatr 12:476–480CrossRef Barnes PM, Jenney MEM (2002) Measuring quality of life. Cur Pediatr 12:476–480CrossRef
5.
go back to reference Málaga S, Somoano O, Fernández F (1995) Problemática escolar en patología crónica. Arch Pediatr 46:90–94 Málaga S, Somoano O, Fernández F (1995) Problemática escolar en patología crónica. Arch Pediatr 46:90–94
6.
go back to reference Wallander JL, Varni JW (1998) Effects of paediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39:29–46CrossRef Wallander JL, Varni JW (1998) Effects of paediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39:29–46CrossRef
7.
go back to reference Kirk S (1998) Families’ experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev 24:101–114CrossRef Kirk S (1998) Families’ experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev 24:101–114CrossRef
8.
go back to reference 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 35:629–637CrossRef 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 35:629–637CrossRef
9.
go back to reference Valderrábano F, Jofre R, López-Gómez JM (2001) Quality of life in end-stage renal disease patients. Am J Kidney Dis 38:443–464CrossRef Valderrábano F, Jofre R, López-Gómez JM (2001) Quality of life in end-stage renal disease patients. Am J Kidney Dis 38:443–464CrossRef
10.
go back to reference 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 14:199–207CrossRef 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 14:199–207CrossRef
11.
go back to reference 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 14:370–378CrossRef 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 14:370–378CrossRef
12.
go back to reference 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 16:1427–1432CrossRef 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 16:1427–1432CrossRef
13.
go back to reference 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 21:1899–1905CrossRef 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 21:1899–1905CrossRef
14.
go back to reference 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 21:846–850CrossRef 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 21:846–850CrossRef
15.
go back to reference 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 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
16.
go back to reference Registro Pediátrico Español de Insuficiencia Renal (REPIR) (2007) Annual Report. XXXIII Congreso Español de Nefrología Pediátrica. Calatayud (España) Registro Pediátrico Español de Insuficiencia Renal (REPIR) (2007) Annual Report. XXXIII Congreso Español de Nefrología Pediátrica. Calatayud (España)
17.
go back to reference 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 91:430–435PubMed 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 91:430–435PubMed
18.
go back to reference 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 12:303–313CrossRef 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 12:303–313CrossRef
19.
go back to reference Riley AW, Forrest CB, Starfield B, Green B, Kang M, Ensminger M (1998) Reliability and validity of the adolescent health profile-types. Med Care 36:1237–1248CrossRef Riley AW, Forrest CB, Starfield B, Green B, Kang M, Ensminger M (1998) Reliability and validity of the adolescent health profile-types. Med Care 36:1237–1248CrossRef
20.
go back to reference Starfield B, Riley AW, Witt WP, Robertson J (2002) Social class gradients in health during adolescence. J Epidemiol Community Health 56:354–361CrossRef Starfield B, Riley AW, Witt WP, Robertson J (2002) Social class gradients in health during adolescence. J Epidemiol Community Health 56:354–361CrossRef
21.
go back to reference 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 17:181–189CrossRef 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 17:181–189CrossRef
22.
go back to reference de Castro EK, Moreno-Jimenez B, Rodríguez-Carvajal R (2007) Psychological well-being in adults transplanted in childhood. Pediatr Transplant 11:272–278CrossRef de Castro EK, Moreno-Jimenez B, Rodríguez-Carvajal R (2007) Psychological well-being in adults transplanted in childhood. Pediatr Transplant 11:272–278CrossRef
23.
go back to reference 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 21:394–399CrossRef 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 21:394–399CrossRef
24.
go back to reference 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 16:951–956CrossRef 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 16:951–956CrossRef
25.
go back to reference 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 44:1017–1023CrossRef 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 44:1017–1023CrossRef
26.
go back to reference 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 19:1262–1266CrossRef 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 19:1262–1266CrossRef
27.
go back to reference 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 18:805–809CrossRef 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 18:805–809CrossRef
28.
go back to reference Gillespie RS, Wolf FM (2004) Intravenous iron therapy in pediatric hemodialysis patients: a meta-analysis. Pediatr Nephrol 19:662–666CrossRef Gillespie RS, Wolf FM (2004) Intravenous iron therapy in pediatric hemodialysis patients: a meta-analysis. Pediatr Nephrol 19:662–666CrossRef
29.
go back to reference 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 178:660–665CrossRef 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 178:660–665CrossRef
30.
go back to reference 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 4:70–74CrossRef 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 4:70–74CrossRef
31.
go back to reference 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 16:1097–1105CrossRef 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 16:1097–1105CrossRef
32.
go back to reference Webb NJA, Johnson R, Postlethwaite RJ (2003) Renal transplantation. Arch Dis Child 88:844–847CrossRef Webb NJA, Johnson R, Postlethwaite RJ (2003) Renal transplantation. Arch Dis Child 88:844–847CrossRef
33.
go back to reference 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 8:205–211CrossRef 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 8:205–211CrossRef
34.
go back to reference 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 1:56–65CrossRef 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 1:56–65CrossRef
35.
go back to reference 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 51:285–297CrossRef 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 51:285–297CrossRef
36.
go back to reference 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 60:130–135CrossRef 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 60:130–135CrossRef
37.
go back to reference Kalantar-Zadeh K, Unruh M (2005) Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol 37:367–378CrossRef Kalantar-Zadeh K, Unruh M (2005) Health related quality of life in patients with chronic kidney disease. Int Urol Nephrol 37:367–378CrossRef
38.
go back to reference 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 26:68–79CrossRef 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 26:68–79CrossRef
39.
go back to reference 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 45:658–666CrossRef 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 45:658–666CrossRef
40.
go back to reference Erling A (1999) Methodological considerations in the assessment of health-related quality of life in children. Acta Pediatr Suppl 428:106–168CrossRef Erling A (1999) Methodological considerations in the assessment of health-related quality of life in children. Acta Pediatr Suppl 428:106–168CrossRef
41.
go back to reference Gipson DS, Ferris ME (2004) A measure of success in kidney transplantations. Pediatr Transplant 8:104–105CrossRef Gipson DS, Ferris ME (2004) A measure of success in kidney transplantations. Pediatr Transplant 8:104–105CrossRef
42.
go back to reference 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 23:1729–1736CrossRef 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 23:1729–1736CrossRef
43.
go back to reference 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 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
Metadata
Title
Quality of life of adolescents with end-stage renal disease and kidney transplant
Authors
Isolina Riaño-Galán
Serafín Málaga
Luis Rajmil
Gema Ariceta
Mercedes Navarro
Cesar Loris
Alfredo Vallo
Publication date
01-08-2009
Publisher
Springer Berlin Heidelberg
Published in
Pediatric Nephrology / Issue 8/2009
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI
https://doi.org/10.1007/s00467-009-1175-0

Other articles of this Issue 8/2009

Pediatric Nephrology 8/2009 Go to the issue