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Abstract
Methods: The next databases were used: PubMed, Scopus, Science Direct, ProQuest, Web of Knowledge and SciVerse. Only scientific papers written either in English or Spanish as well as having a cross-sectional design were considered. The main variables affecting the quality of life, amongst which stand out therapeutics, were analyzed. Also, the different ways for measuring the quality of life as well as differences in its perception between patients and their families were studied.
Results: Thirteen papers were found: only one of them used specifically prepared questionnaire for this type of patients, ten used general questionnaires and the last two papers mixed both types. The general questionnaires studied the variable "therapeutic modality" used as well as other factors affecting the quality of life such as dream and mental disorders; on the other side, the specific questionnaire only studied the variable "therapeutic modality". The cases in which both types of questionnaires were used allowed a comparison between the two approaches, being "therapeutic modality" the main variable to be considered.
Most papers included a family report for evaluating the quality of life.
Conclusions: Pediatric patients with chronic kidney disease have a worse quality of life than people with other chronic diseases such as, for instant, diabetes. Children either transplanted or under a conservative treatment enjoyed a better quality of ife that those subjected to dialysis.
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Copyright (c) 2012 Pablo Jesús López Soto
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References
- National Kidney Foundation. KDOQI clinical practice guidelines for chronic kidney disease: evalua-tion, classification, and stratification. Am J Kidney Dis 2002; 39 [2 Suppl 1]:S1–S266.
- Gill TM, Feinstein AR. A critical appraisal of the quality of life Measurements. JAMA 1994; 272(8): 619-626.
- Asociación Española de Nefrología Pediátrica. Noticias [en línea]: de la AENP http://www.aenp.es/index.php?option=com_content&view=article&id=108:presentacion-del-registro-es-panol-de-insuficiencia-renal-cronica-terminal-repir&catid=13:noticias-aenp&Itemid=75 [Consulta: 21 de Abril de 2012].
- Aparicio López, María Cristina. “Calidad de vida en pacientes pediátricos con enfermedad renal crónica y repercusión psicológica en sus padres”. Directores: Ángel Pedro Carrillo Álvarez, Angustias Fernández Escribano. Universidad Complutense de Madrid, Facultad de Medicina, Departamento de Pediatría, 2003.
- Levi R, Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health condition. In: Drotar D, editor. Measuring health-related quali-ty of life in children and adolescents Implications for research and practice. Hillsdale, New Jersey: Lawrence Erlbaum Associates; 1998. p. 3-24.
- Schwartzmann L. Calidad de vida relacionada con la salud: aspectos conceptuales. Ciencia y enferme-ría 2003; 9(2): 9-21.
- TESTA M. Current Concepts: Assessment of Quali-ty-of-Life Outcomes. N Engl J Med, 1996; 334(13), 835-840.
- Nanda U, Andresen E. Health related Quality of life, a guide por the health professional. Evaluation & the Health Professions 1998; 21: 179-215.
- Gerson A, Hwang W, FIorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth S. Ane-mia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 2004; 44:1017-1023.
- Burke C. Testing an Asthma quality of life model. Jour¬nal of theory construction & testing 2001; 5: 38-44.
- Aparicio C, Fernández A, Izquierdo E, Luque A, Ga-rrido G. Medida mediante un test específico de la calidad de vida relacionada con la salud en niños con enfermedad renal crónica. Influencia del trata-miento. Nefrología 2010; 30 (2):177-84.
- Buyan N, Türkmen MA, Bilge I, Baskin E, Habe-ral M, Bilginer Y, Mir S, Emre S, Akman s, Ozkaya O, Fidan K, Alpay H, Kavukcu s, Sever L, Özçakar ZB, Dogrucan N. Quality of life in children with chronic kidney disease (with child and parente assessments). Pediatr Neprhol 2010; 25:1487-1496.
- Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care. 1989;27(3 Suppl):S217-S232.
- Davis ID, Greenbaum LA, Gipson D, Wu LL, Sinha R, Matsuda-Abedini M, Emancipator JL, Lane JC, Hodgkins K, Nailescu C, Barletta GM, Arora S, Ma-han JD, Rosen CL. Prevalence of sleep disturban-ces in children and adolescents with chronic kidney disease. Pediatr Nephrol. 2012; 27(3):451-9.
- Roumelioti ME, Wentz A, Schneider MF, Gerson AC, Hooper S, Benfield M, Warady BA, Furth SL, Unruh ML. Sleep and fatigue symptoms in children and adolescents with CKD: a cross-sectional analysis from the chronic kidney disease in children (CKiD) study. Am J Kidney Dis. 2010; 55(2):269-80.
- Marciano RC, Soares CMB, Diniz JSS, Lima EM, Silva JMP, Canhestro MR, Gazzinelli A, Melo CCD, Dias CS, Simões e Silva AC, Correa H, Oliveira EA. Behavioral disorders and low quality of life in chil-dren and adolescents with chronic kidney disease. Pediatr Nephrol 2011; 26:281–290.
- Malekahmadi MR, Rahimzadeh S, Dezfuli Nejad ML, Lankarani MM, Einollahi B, Assari S. Impor-tance of socioeconomic, clinical, and psychological factors on health-related quality of life in adolescents after kidney transplant. Exp Clin Transplant 2011; 9(1):50-5.
- Heath J, MacKinlay D, Watson AR, Hames A, Wirz L, Scott S, Klewchuk E, Milford D, McHugh K. Self-reported quality of life in children and young people with chronic kidney disease. Pediatr Nephrol 2011; 26:767–773.
- Varni JW, Limbers CA, Burwinckle TM. Impaired health-related quality of life in children and adoles-cents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/seve-rities utilizing the PedsQL™ 4.0 Generic Core Sca-les. Health and Quality of Life Outcomes 2007; 5:43.
- Gerson AC, Wentz A, Abraham AB, Mendley SR, Hooper SR, Butler RW, Gipson DS, Lande MB, Shinnar S, Moxey-Mims MM, Warady BA, Furth SL. Health-related quality of life of children with mild to moderate chornic kidney disease. Pediatrics 2010; 125(2):e349-57.
- Aparicio C, Fernández A, Izquierdo E, Luque A, Garrido G. Calidad de vida percibida por niños con enfermedad renal crónica y por sus padres. Nefro-logía 2010; 30 (1);103-9.
- Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonald R, Limbers C, Varni JW. Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL EsRD analysis. Pediatr Nephrol 2009; 24:1553-1560.
- Dodson JL, Diener-West M, Gerson AC, Kaskel FJ, Furth SL. An assessment of health related quality of life using the child health and illness profile-ado-lescent edition in adolescents with chronic kidney disease due to underlying urological disorders. J Urol. 2007; 178(2):660-5.
- Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Polloch-Bar-Ziv SM. Child and parental perspectives of multi-dimensional quality of life outcomes after kidney transplantation. Pediatr transplantation 2010; 14:249-256.
- Jirojanakul P, Skevington SM, Hudson J. Predicting young children’s quality of life. Soc Sci Med. 2003; 57:1277–1288.
- McKenna AML, Keating E, Vigneux A, Stevens S, Williams A, Geary DF. Quality of life in children with chronic kidney disease-patient and caregiver assessments. Neprhrol Dial Transplant 2006; 21:1899-905.
- Bobes J, Bousoño García M, García-Portilla MP, Pedregal Sánchez J, editores. Calidad de vida y sueño. Novograf, S.L.
- McDonald SP, Craig JC. Long-term survival of chil-dren with end-stage renal disease. N ENgl J Med 2004; 350:2654-2662.
References
National Kidney Foundation. KDOQI clinical practice guidelines for chronic kidney disease: evalua-tion, classification, and stratification. Am J Kidney Dis 2002; 39 [2 Suppl 1]:S1–S266.
Gill TM, Feinstein AR. A critical appraisal of the quality of life Measurements. JAMA 1994; 272(8): 619-626.
Asociación Española de Nefrología Pediátrica. Noticias [en línea]: de la AENP http://www.aenp.es/index.php?option=com_content&view=article&id=108:presentacion-del-registro-es-panol-de-insuficiencia-renal-cronica-terminal-repir&catid=13:noticias-aenp&Itemid=75 [Consulta: 21 de Abril de 2012].
Aparicio López, María Cristina. “Calidad de vida en pacientes pediátricos con enfermedad renal crónica y repercusión psicológica en sus padres”. Directores: Ángel Pedro Carrillo Álvarez, Angustias Fernández Escribano. Universidad Complutense de Madrid, Facultad de Medicina, Departamento de Pediatría, 2003.
Levi R, Drotar D. Critical issues and needs in health-related quality of life assessment of children and adolescents with chronic health condition. In: Drotar D, editor. Measuring health-related quali-ty of life in children and adolescents Implications for research and practice. Hillsdale, New Jersey: Lawrence Erlbaum Associates; 1998. p. 3-24.
Schwartzmann L. Calidad de vida relacionada con la salud: aspectos conceptuales. Ciencia y enferme-ría 2003; 9(2): 9-21.
TESTA M. Current Concepts: Assessment of Quali-ty-of-Life Outcomes. N Engl J Med, 1996; 334(13), 835-840.
Nanda U, Andresen E. Health related Quality of life, a guide por the health professional. Evaluation & the Health Professions 1998; 21: 179-215.
Gerson A, Hwang W, FIorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth S. Ane-mia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 2004; 44:1017-1023.
Burke C. Testing an Asthma quality of life model. Jour¬nal of theory construction & testing 2001; 5: 38-44.
Aparicio C, Fernández A, Izquierdo E, Luque A, Ga-rrido G. Medida mediante un test específico de la calidad de vida relacionada con la salud en niños con enfermedad renal crónica. Influencia del trata-miento. Nefrología 2010; 30 (2):177-84.
Buyan N, Türkmen MA, Bilge I, Baskin E, Habe-ral M, Bilginer Y, Mir S, Emre S, Akman s, Ozkaya O, Fidan K, Alpay H, Kavukcu s, Sever L, Özçakar ZB, Dogrucan N. Quality of life in children with chronic kidney disease (with child and parente assessments). Pediatr Neprhol 2010; 25:1487-1496.
Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care. 1989;27(3 Suppl):S217-S232.
Davis ID, Greenbaum LA, Gipson D, Wu LL, Sinha R, Matsuda-Abedini M, Emancipator JL, Lane JC, Hodgkins K, Nailescu C, Barletta GM, Arora S, Ma-han JD, Rosen CL. Prevalence of sleep disturban-ces in children and adolescents with chronic kidney disease. Pediatr Nephrol. 2012; 27(3):451-9.
Roumelioti ME, Wentz A, Schneider MF, Gerson AC, Hooper S, Benfield M, Warady BA, Furth SL, Unruh ML. Sleep and fatigue symptoms in children and adolescents with CKD: a cross-sectional analysis from the chronic kidney disease in children (CKiD) study. Am J Kidney Dis. 2010; 55(2):269-80.
Marciano RC, Soares CMB, Diniz JSS, Lima EM, Silva JMP, Canhestro MR, Gazzinelli A, Melo CCD, Dias CS, Simões e Silva AC, Correa H, Oliveira EA. Behavioral disorders and low quality of life in chil-dren and adolescents with chronic kidney disease. Pediatr Nephrol 2011; 26:281–290.
Malekahmadi MR, Rahimzadeh S, Dezfuli Nejad ML, Lankarani MM, Einollahi B, Assari S. Impor-tance of socioeconomic, clinical, and psychological factors on health-related quality of life in adolescents after kidney transplant. Exp Clin Transplant 2011; 9(1):50-5.
Heath J, MacKinlay D, Watson AR, Hames A, Wirz L, Scott S, Klewchuk E, Milford D, McHugh K. Self-reported quality of life in children and young people with chronic kidney disease. Pediatr Nephrol 2011; 26:767–773.
Varni JW, Limbers CA, Burwinckle TM. Impaired health-related quality of life in children and adoles-cents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/seve-rities utilizing the PedsQL™ 4.0 Generic Core Sca-les. Health and Quality of Life Outcomes 2007; 5:43.
Gerson AC, Wentz A, Abraham AB, Mendley SR, Hooper SR, Butler RW, Gipson DS, Lande MB, Shinnar S, Moxey-Mims MM, Warady BA, Furth SL. Health-related quality of life of children with mild to moderate chornic kidney disease. Pediatrics 2010; 125(2):e349-57.
Aparicio C, Fernández A, Izquierdo E, Luque A, Garrido G. Calidad de vida percibida por niños con enfermedad renal crónica y por sus padres. Nefro-logía 2010; 30 (1);103-9.
Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonald R, Limbers C, Varni JW. Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL EsRD analysis. Pediatr Nephrol 2009; 24:1553-1560.
Dodson JL, Diener-West M, Gerson AC, Kaskel FJ, Furth SL. An assessment of health related quality of life using the child health and illness profile-ado-lescent edition in adolescents with chronic kidney disease due to underlying urological disorders. J Urol. 2007; 178(2):660-5.
Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Polloch-Bar-Ziv SM. Child and parental perspectives of multi-dimensional quality of life outcomes after kidney transplantation. Pediatr transplantation 2010; 14:249-256.
Jirojanakul P, Skevington SM, Hudson J. Predicting young children’s quality of life. Soc Sci Med. 2003; 57:1277–1288.
McKenna AML, Keating E, Vigneux A, Stevens S, Williams A, Geary DF. Quality of life in children with chronic kidney disease-patient and caregiver assessments. Neprhrol Dial Transplant 2006; 21:1899-905.
Bobes J, Bousoño García M, García-Portilla MP, Pedregal Sánchez J, editores. Calidad de vida y sueño. Novograf, S.L.
McDonald SP, Craig JC. Long-term survival of chil-dren with end-stage renal disease. N ENgl J Med 2004; 350:2654-2662.