CKD: Holistic Care May Improve Low QOL in Young Patients

Laurie Barclay, MD

June 28, 2013

Adolescents and young adults with chronic kidney disease (CKD) have low quality of life (QOL) and are willing to trade life expectancy for perfect health, according to a cross-sectional study published online June 24 in the Journal of Pediatrics.

"Delayed growth, social isolation, fatigue, depression, poor school attendance and impaired cognitive development, and low self-esteem have been consistently reported by children and adolescents on dialysis," write Allison Tong, PhD, from the Center for Kidney Research, The Children's Hospital at Westmead, New South Wales, Australia, and colleagues. "These challenges can have a detrimental impact on adherence, satisfaction, and outcomes. Consideration of QOL is paramount in achieving optimal psychosocial and treatment outcomes, yet QOL is neither routinely nor consistently measured."

Utility-based QOL is used to examine the relative desirability of health states rated on a scale ranging from 0 (death) to 1 (full health). To assess utility-based QOL in adolescents and young adults with CKD, the investigators studied 27 patients aged 12 to 25 years with stage 3 to stage 5 and 5D CKD at 6 centers in Australia.

A visual analog scale allowed QOL measurement. For evaluation of utility-based QOL, the investigators used Health Utilities Index Mark 2 and 3 (HUI2/3), Kidney Disease QOL short form (SF)-12 transformed to SF-6D, and time trade-off (TTO). They identified predictors for TTO QOL weights, SF-6D, and visual analog scale scores using multiple linear regression.

On the utility scale of 0 (death) to 1 (full health), mean TTO QOL weight was 0.59 ± 0.40, HUI2 was 0.73 ± 0.28, HUI3 was 0.74 ± 0.26, and SF-6D was 0.70 ± 0.14. QOL weights had the lowest mean score and greatest variability in TTO responses but were consistently low using all 4 utility-based instruments.

Participants not yet receiving dialysis had higher mean QOL weights. The HUI2 showed variability in the emotion domain, which the study authors suggest may reflect the differences between a broad range of factors affecting emotion, such as individual personalities, support systems, adjustment to treatment, comorbidities, and other life circumstances.

All QOL domains were decreased on the Kidney Disease QOL measures. However, kidney disease accounted for a significantly higher burden among patients receiving dialysis compared with those not yet doing so dialysis.

Study Limitations and Implications

"Adolescent and young adults with CKD report low QOL values," the study authors write. "Their utility-based QOL scores imply they are willing to trade considerable life expectancy for perfect health. Holistic care to improve QOL and minimize disease burden are imperative for optimizing health outcomes in young people with CKD, particularly those on dialysis."

Limitations of this study include the relatively small sample size, resulting in limited power to detect differences across and within instruments, and possibly insufficient sensitivity of the instruments used to detect relatively small changes in QOL. In addition, participants with cognitive impairment who are unable to give informed consent or to complete testing were excluded, which may have affected the results in the cognition domain.

"Health-related QOL should be a high priority in the care of young people with CKD, and this study provides the only available data on utility-based QOL, which can be used to perform decision analysis and cost-utility analysis in comparing different interventions to inform how best to allocate scarce resources," the study authors conclude. "The findings [emphasize] the need for holistic and multifaceted interventions targeted as improving QOL to maximize overall health and treatment outcomes for young people waiting for a kidney transplant."

The Mark Cocks Transplant Research Scholarship, Transplant Australia, funded this study. Dr. Tong is supported by a National Health and Medical Research Fellowship. The other authors have disclosed no relevant financial relationships.

J Pediatr . Published online June 24, 2013. Abstract


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