Top

Pediatric Nephrology

Published in:

01-07-2014 | Original Article

Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers

Authors: Marcos Lopes, Alexandre Ferraro, Vera H. Koch

Published in: Pediatric Nephrology | Issue 7/2014

Abstract

Background

Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC).

Methods

This study describes the perception of health-related quality of life (HRQoL) of children/adolescents with CKD stages 4–5, as well as of their PC (n = 64), in comparison to healthy peers and their PC (n = 129), respectively, based on the Peds QL™ 4.0 and Short Form-36 (SF-36) questionnaires and selected biomarkers.

Results

Patients reported a deleterious impact on physical capacity and on social and school activities. A negative influence on emotional aspects was reported by older patients, but not by their PC. Hemodialysis, followed by peritoneal dialysis, had a more negative impact on patients’ physical functioning domain. PC HRQol proxy reports differed from those of their children, especially in older patients. PC of both groups presented similar SF-36 scores. An association was demonstrated between the magnitude of treatment target inadequacies, lower specific dominion scores in the patients/PC proxy reports and PC SF-36 general health scores.

Conclusion

The HRQoL of patients with CKD stages 4–5 is negatively affected to different degrees depending on age and treatment modality. The results suggest an association between worsening HRQoL parameters and inadequate control of recognized therapeutic CKD treatment targets.

Hogg RJ, Furth S, Lemley KV, Portman R, Schwartz G, Coresh J, Balk E, Lau J, Levin A, Kausz AT, Eknoyan G, Balk E, Lau J, Levin A, Kausz AT, Eknoyan G, Levey AS (2003) National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative, Clinical Practice Guidelines for Chronic Kidney Disease in Children and Adolescents: evaluation, classification and stratification. Pediatrics 111:1416–1421PubMedCrossRef

Stein REK (1992) Chronic physical disorders. Pediatr Rev 13:224–229PubMedCrossRef

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 21:846–850PubMedCrossRef

López CA, Fernández Escribano A, Cantanero GG, Luque A, Izquierdo García E (2010) Quality of life perceived by children with chronic kidney disease and by their parents. Nefrologia 30:103–109

Goldstein SL, Gerson AC, Furth S (2007) Health-related quality of life for children with chronc kidney disease. Adv Chron Kidney Dis 14:364–369CrossRef

Watson AR (1995) Strategies to support families of children with end-stage enal failure. Pediatr Nephrol 9:628–631PubMedCrossRef

Woods NF, Yates BC, Primomo J (1989) Supporting families during chronic illness. J Nurs Scholarsh 21:46–50CrossRef

Soliday E, Kool E, Lande MB (2001) Family environment, child behavior, and medical indicators in children with kidney disease. Child Psychiatry Hum Dev 31:279–295PubMedCrossRef

Tsai T-C, Liu S-I, Tsai J-D, Chou L-H (2006) Psychosocial effects on caregivers for children on chronic peritoneal dialysis. Kidney Int 70:1983–1987PubMedCrossRef

10.

Madden SJ, Hastings RP, Hoff WV (2002) Psychological adjustment in children with end stage renal disease: the impact of maternal stess and coping. Child Care Health Dev 28:323–330PubMedCrossRef

11.

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 39:800–812PubMedCrossRef

12.

Klatchoian DA, Len CA, Terreri MTRA, Silva M, Itamoto C, Ciconelli RM, Varni JW, Hilário MO (2008) Qualidade de vida de crianças e adolescentes de São Paulo: confiabilidade e validade da versão brasileira do questionário genérico Pediatric Quality of Life Inventory^TM versão 4.0. J Pediatr 84:308–315

13.

Ciconelli RM, Mb F, Santos W (1998) Tradução para a língua portuguesa e validação do questionário genérico de avaliação de qualidade de vida SF-36 (Brasil-36). Rev Bras Reumatol 39:143–150

14.

Dinwiddie LC, Burrows-Hudson S, Peacock EJ (2006) Stage 4: chronic kidney disease. Am J Nurs 106:40–51PubMedCrossRef

15.

Soliday E, Lande MB, Kool E (2000) Psychosocial adjustment in children with kidney disease. J Pediatr Psychol 25:93–103PubMedCrossRef

16.

Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13PubMedCrossRef

17.

Olandoski KP, Koch V, Trigo-Rocha FE (2011) Renal function in children with congenital neurogenic bladder. Clinics (São Paulo) 66:189–195CrossRef

18.

Buyan N, Türkmen MA, Bilge I, Baskin E, Haberal M, Bilginer Y, Mir S, Emre S, Akman S, Ozkaya O, Fidan K, Alpay H, Kavukcu S, Sever L, Ozçakar ZB, Dogrucan N (2010) Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 25:1487–1496PubMedCrossRef

19.

Heath J, Mackinlay D, Watson AR, Hames A, Wirz L, Scott S, Klewchuk E, Milford D, McHugh K (2011) Self-reported quality of life in children and young people with chronic kidney disease. Pediatr Nephrol 26:767–773PubMedCrossRef

20.

http://www.criticalthinking.org/pages/accelerating-change/474. Accessed 19 Dec 2013

21.

Raina P, O’Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E (2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115:e626–e636PubMedCrossRef

22.

Diseth TH, Tangeraas T, Reinfjell, Bjerre A (2011) Kidney transplantation in childhood: mental health and quality of life of children and caregivers. Pediatr Nephrol 26:1881–1892PubMedCentralPubMedCrossRef

23.

Gerson AC, Wentz A, Abraham AG, Mendley SR, Hooper SR, Butler RW, Gipson DS, Lande MB, Shinnar S, Moxey-Mims MM, Warady BA, Furth SL (2010) Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 125:e349–e357PubMedCentralPubMedCrossRef

24.

Sartain SA, Clarke CL, Heyman R (2000) Hearing the voices of children with chronic illness. J Adv Nurs 32:913–921PubMed

25.

Gorlén T, Ekeberg O, Abdelnoor M, Enger E, Aarseth HP (1993) Quality of life after kidney transplantation. A 10–22 years follow-up. Scand J Urol Nephrol 27:89–92PubMedCrossRef

26.

Tong A, Morton R, Howard K, McTaggart S, Craig JC (2011) “When I had my transplant, I became normal”. Adolescent perspectives on life after kidney transplantation. Pediatr Transplant 15:285–293PubMedCrossRef

27.

Magnificat S, Dazord A, Cochat P, Morin D, Plainguet F, Debray D (2003) Quality of life of children and adolescents after kidney or liver transplantation: child, parents and caregiver’s point of view. Pediatr Transplant 7:228–235CrossRef

28.

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 24:1561–1568PubMedCrossRef

29.

Falger J, Landolt MA, Latal B, Rüth EM, Neuhaus TJ, Laube GF (2008) Outcome after renal transplantation. Part II: quality of life and psychosocial adjustment. Pediatr Nephrol 23:1347–1354PubMedCrossRef

30.

Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock-BarZiv SM (2010) Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation. Pediatr Transplant 14:249–256PubMedCrossRef

31.

Goldbeck L (2006) The impact of newly diagnosed paediatric conditions on parental quality of life. Qual Life Res 15:1121–1131PubMedCrossRef

32.

Morrow AM, Hayen A, Quine S, Scheinberg A, Criag JC (2011) A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev 38:186–195PubMedCrossRef

33.

Sawyer SM, Drew S, Yeo MS, Britto MT (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369:1481–1489PubMedCrossRef

34.

Park KS, Hwang YJ, Cho MH, Ko CW, Ha IS, Kang HG, Cheong HI, Park YS, Lee YJ, Lee JH, Cho HY (2012) Quality of life in children with end-stage renal disease based on a PedsQL ESRD module. Pediatr Nephrol 27:2293–2300PubMedCrossRef

35.

Neul SK, Minard CG, Currier H, Goldstein SL (2013) Health-related quality of life functioning over a 2-year period in children with end-stage renal disease. Pediatr Nephrol 28:285–293PubMedCrossRef

36.

Lopes M, Koch VH, Varni JW (2011) Translation and cultural adaptation of Peds QL™ ESRD to Portuguese. J Bras Nefrol 33:448–456PubMedCrossRef

Title: Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers
Authors: Marcos Lopes
Alexandre Ferraro
Vera H. Koch
Publication date: 01-07-2014
Publisher: Springer Berlin Heidelberg
Published in: Pediatric Nephrology / Issue 7/2014
Print ISSN: 0931-041X
Electronic ISSN: 1432-198X
DOI: https://doi.org/10.1007/s00467-014-2769-8

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Health-related quality of life of children and adolescents with CKD stages 4–5 and their caregivers

Abstract

Background

Methods

Results

Conclusion

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 7/2014

Psychosocial support for children and families requiring renal replacement therapy

Fetal renin-angiotensin-system blockade syndrome: renal lesions

Protein energy wasting in children with chronic kidney disease

Montelukast: a novel therapeutic option in eosinophilic peritonitis

Subcutaneous nodules in a child on long-term dialysis: Answers

In memoriam of Clark Darwin West, MD July 4, 1918–January 11, 2014