Optimal care of the pediatric chronic kidney disease/end stage renal disease (CKD/ESRD) patient must now incorporate health-related quality of life (HRQOL) assessment and management.
This study reports the first data on longitudinal change in global (PedsQLTM4.0) and disease-specific (PedsQLTM3.0 ESRD Module) HRQOL pediatric ESRD patient and proxy ratings over four assessment periods spanning approximately a 2-year period. General linear mixed modeling was used to analyze associations between patient demographics, medical variables, and patient and proxy HRQOL scores.
Self-reported and/or proxy data were available for at least two time-points for 53 patients (age 2–18 years; 60 % male), of whom 27 were receiving in-center hemodialysis.
Patient ratings on global health and physical activity, emotional, and social and disease-specific worry and communication domains were higher (i.e., better) than parent-proxy ratings, confirming the importance of obtaining both sources of information. Patients on dialysis longer, particularly females, reported worse emotional functioning; females also reported more physical appearance concerns. Parents rated older children and those on dialysis longer as functioning worse on multiple global and disease-specific (e.g., fatigue, relationship) domains. Parents also rated children as functioning increasingly worse in school over time. Further, patient ESRD history (acute onset vs. medically managed) impacted how parents viewed the burden of ESRD on their child over time.
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Goldstein SL, Gerson AC, Goldman CW, Furth S (2006) Quality of life for children with chronic kidney disease. Semin Nephrol 26:114–117
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 94:2090–2106
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
Gerson AC, Butler R, Moxey-Mims M, Wentz A, Shinnar S, Lande MB, Mendley SR, Warady BA, Furth SL, Hooper SR (2006) Neurocognitive outcomes in children with chronic kidney disease: current findings and contemporary endeavors. Ment Retard Dev Disabil Res Rev 12:208–215
Fukunishi I, Honda M (1995) School adjustment of children with end-stage renal disease. Pediatr Nephrol 9:553–557
Brownbridge G, Fielding DM (1994) Psychosocial adjustment and adherence to dialysis treatment regimes. Pediatr Nephrol 8:744–749
Fielding D, Brownbridge G (1999) Factors related to psychosocial adjustment in children with end-stage renal failure. Pediatr Nephrol 13:766–770
Rosenkranz J, Bonzel KE, Bulla M, Michalk D, Offner G, Reichwald-Klugger E, Scharer K (1992) Psychosocial adaptation of children and adolescents with chronic renal failure. Pediatr Nephrol 6:459–463
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
Gilman C, Frauman A (2006) The child with kidney disease. Nephrol Nurs J 33:309–316
Grootenhuis MA, Stam H, Last BF, Groothoff JW (2006) The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood. Pediatr Nephrol 21:538–544
Groothoff JW, Grootenhuis MA, Offringa M, Stronks K, Hutten GJ, Heymans HS (2005) Social consequences in adult life of end-stage renal disease in childhood. J Pediatr 146:512–517
Henning P, Tomlinson L, Rigden SP, Haycock GB, Chantler C (1988) Long term outcome of treatment of end stage renal failure. Arch Dis Child 63:35–40
Morton MJ, Reynolds JM, Garralda ME, Postlethwaite RJ, Goh D (1994) Psychiatric adjustment in end-stage renal disease: a follow up study of former paediatric patients. J Psychosom Res 38:293–303
Goldstein SL, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle TM, Limbers CA, Varni JW (2008) Measuring health-related quality of life in children with ESRD: performance of the generic and ESRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). Am J Kidney Dis 51:285–297
Frost MH, Bonomi AA, Cappelleri JC, Schünemann H, Moynihan TJ, Aaronson N (2003) Applying quality-of-life data formally and systematically into clinical practice. Clin Ther 25[Suppl D]:D10
Varni JW, Burwinkle TM, Lane MM (2005) Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcome 3:34
Seid M, Yu H, Lotstein D, Varni JW (2005) Using health-related quality of life to predict and manage pediatric healthcare. Expert Rev Pharmacoecon Outcomes Res 5:489–498
Varni JW, Limbers CA (2009) The pediatric quality of life inventory: measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin North Am 56:843–863
Centers for Medicare & Medicaid Services (2008) Conditions for coverage (CfCs) & conditions of participations (CoPs) for end-stage renal disease facilities. Centers for Medicare & Medicaid Services, Baltimore. Available at: www.CMS.gov
Schatell D, Witten B (2008) Measuring dialysis patients’ health-related quality of life with the KDQOL-36. Life Options Website. Medical Education Institute, Madison. Available at: www.lifeoptions.org
Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37:126–139
Goldstein SL (2008) Children with chronic kidney disease: Health-related quality of life must be assessed. Nephrol Times 1:3–4
Goldstein SL (2009) Quality of life in children with CKD: research expanding, but more sorely needed. Nephrol Times 2:15–17
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 39:800–812
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 3:329–341
Ferris ME, Gipson DS, Kimmel PL, Eggers PW (2006) Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 21:1020–1026
Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360
Tong A, Lowe A, Sainsbury P, Craig JC (2010) Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev 36:549–557
Aldridge MD (2008) How do families adjust to having a child with chronic kidney failure? A systematic review. Nephrol Nurs J 35:157–162
Reynolds JM, Morton MJ, Garralda ME, Postlethwaite RJ, Goh D (1993) Psychosocial adjustment of adult survivors of a paediatric dialysis and transplant programme. Arch Dis Child 68:104–110
Riaño-Galán I, Málaga S, Rajmil L, Ariceta G, Navarro M, Loris C, Vallo A (2009) Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatr Nephrol 24:1561–1568
Achenbach TM, McConaughy SH, Howell CT (1987) Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity. Psychol Bull 101:213–232
Varni JW, Limbers CA, Burwinkle TM (2007) Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic core scales. Health Qual Life Outcome 5:2
Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM (1998) The pediatric cancer quality of life inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 21:179–204
The authors acknowledge the members of the Texas Children’s Renal Quality of Life Program: Meredith Vela, Frida Wilson, Julie Guillen, Robin Davis, Ashley Fadul, and Lindsey Gregg who administer the PedsQLTM measures to our patients and who tirelessly coordinate efforts to provide much needed support to the children in our unit and their families. This work was supported, in part, by the Dan L. Duncan Institute for Clinical and Translational Research at Baylor College of Medicine, Houston, TX.
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Neul, S.K., Minard, C.G., Currier, H. et al. Health-related quality of life functioning over a 2-year period in children with end-stage renal disease. Pediatr Nephrol 28, 285–293 (2013). https://doi.org/10.1007/s00467-012-2313-7
- Chronic kidney disease
- Health-related quality of life