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The aim of the study was to analyse the health-related quality of life (HRQoL) in Polish children with chronic kidney disease (CKD) dependant on the CKD stage, treatment modality and selected social life elements in families of the patients. Furthermore, potential differences between self-report and parent/proxy reports and the factors influencing them were assessed.
A total of 203 CKD children (on haemodialysis (HD), peritoneal dialysis (PD) and conservative treatment (CT)) and their 388 parent/proxies were enrolled into a cross-sectional national study. The demographic and social data were evaluated. We used the Paediatric Quality of Life Inventory 4.0 Generic Core Scales to assess the HRQoL in children.
Health-related quality of life scores for all CKD groups were significantly lower in all domains compared with population norms, the lowest one being in the HD group. In CT children, HRQoL did not depend on the CKD stage. Both parents assessed the HRQoL of their children differently depending on their involvement in the care. There are differences between the HRQoL scores of the children and their parents.
The HRQoL in children with CKD is lower than in healthy children. This is already observed in the early stages of the disease. The disease itself influences the child’s mental state. Children on HD require special support on account of the lowest demonstrated overall HRQoL. Children’s lower rating of the quality of life observed by their parents may render the patients unmotivated and adversely affect their adjustment to life in later years. It may also create conflicts between the parents and the children.
Bruce, M. A., Beech, B. M., Sims, M., Brown, T. N., Wyatt, S. B., Taylor, H. A., et al. (2009). Social environmental stressors, psychological factors, and kidney disease. Journal of Investigative Medicine, 57, 583–589. PubMed
The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization (1995). Social Science and Medicine, 41, 1403–1409.
Black, C., Sharma, P., Scotland, G., McCullough, K., McGurn, D., Robertson, L., et al. (2010). Early referral strategies for management of people with markers of renal disease: A systematic review of the evidence of clinical effectiveness, cost-effectiveness and economic analysis. Health Technology Assessment, 14, 1–184. PubMed
Lai, W. M. (2009). Quality of life in children with end-stage renal disease: Does treatment modality matter? Peritoneal Dialysis International, 29(Suppl 2), S190–S191. PubMed
McKenna, A. M., Keating, L. E., Vigneux, A., Stevens, S., Williams, A., & Geary, D. F. (2006). Quality of life in children with chronic kidney disease-patient and caregiver assessments. Nephrology Dialysis Transplantation, 21, 1899–1905. CrossRef
Varni, J. W., Burwinkle, T. M., & Katz, E. R. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics : The official journal of the Ambulatory Pediatric Association, 3, 329–341. CrossRef
Varni, J.W. PedsQL TM (Pediatric Quality of Life Inventory TM). www.pedsql.org.
K/DOQI clinical practice guidelines for chronic kidney disease: Evaluation, classification and stratification. (2002). American Journal of Kidney Diseases : the official journal of the National Kidney Foundation, 39, suppl.1.
Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of Life Research : An international journal of quality of life aspects of treatment, care and rehabilitation, 15, 203–215. CrossRef
Garralda, M. E., Jameson, R. A., Reynolds, J. M., & Postlethwaite, R. J. (1988). Psychiatric adjustment in children with chronic renal failure. Journal of Child Psychology and Psychiatry and Allied Disciplines, 29, 79–90. CrossRef
de Abreu, M. M., Walker, D. R., Sesso, R. C., & Ferraz, M. B. (2011). Health-related quality of life of patients recieving hemodialysis and peritoneal dialysis in São Paulo, Brazil: A longitudinal study. Value in Health: The journal of the International Society for Pharmacoeconomics and Outcomes Research, 14(5 Suppl 1), S119–S121. CrossRef
Salek S. (1996). Quality of life assessment in patients on peritoneal dialysis: A review of the state of the art. Peritoneal Dialysis International : journal of the International Society for Peritoneal Dialysis, 16, (Suppl.1), 398–401.
Walters, B. A., Hays, R. D., Spritzer, K. L., Fridman, M., & Carter, W. B. (2002). Health-related quality of life, depressive symptoms, anemia, and malnutrition at hemodialysis initiation. American Journal of Kidney Diseases : The official journal of the National Kidney Foundation, 40, 1185–1194. CrossRef
Jansen D.L., Grootendorst D.C., Rijken M., Heijmans M., Kaptein A.A., Boeschoten E.W., Dekker F.W.; PREPARE-2 Study Group. (2010). Pre-dialysis patients’ perceived autonomy, self-esteem and labor participation: associations with illness perceptions and treatment perceptions. A cross-sectional study. BMC Nephrology, 8(11) 35 [electronic resource].
Cremeens J., Eiser C., Blades M. (2006). Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes [electronic resource], 4, 58.
Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of life research : An international journal of quality of life aspects of treatment, care and rehabilitation, 17, 895–913. CrossRef
Lauth, B., Arnkelsson, G. B., Magnússon, P., Skarphéðinsson, G. Á., Ferrari, P., & Pétursson, H. (2010). Parent-youth agreement on symptoms and diagnosis: assessment with a diagnostic interview in an adolescent inpatient clinical population. Journal of Physiology Paris, 104, 315–322. CrossRef
Morrow, A. M., Hayen, A., Quine, S., Scheinberg, A., & Craig, J. C. (2012). 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 and Development, 38, 186–195.
Tong, A., Lowe, A., Sainsbury, P., & Craig, J. C. (2010). Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child: Care Health and Development, 36, 549–557.
- Perception of health-related quality of life in children with chronic kidney disease by the patients and their caregivers: Multicentre national study results
Irena Bałasz Chmielewska
- Springer Netherlands