Lopes Marcos, Ferraro Alexandre, Koch Vera H
Department of Pediatrics, Pediatric Nephrology Unit, Instituto da Criança Hospital das Clinicas of the University of Sao Paulo Medical School, Rua das Mangabeiras 91/81, 01233-010, São Paulo, Brazil.
Pediatr Nephrol. 2014 Jul;29(7):1239-47. doi: 10.1007/s00467-014-2769-8. Epub 2014 Feb 28.
Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC).
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.
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.
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.
肾脏替代治疗可能会影响患者及其主要照顾者（PC）的生活质量。
本研究基于儿童生活质量量表（Peds QL™）4.0版和简明健康状况调查问卷（SF-36）以及选定的生物标志物，分别比较了4-5期慢性肾脏病儿童/青少年及其PC（n = 64）与健康同龄人及其PC（n = 129）对健康相关生活质量（HRQoL）的认知。
患者报告身体能力以及社交和学校活动受到有害影响。年长患者报告情绪方面受到负面影响，但其PC未报告。血液透析对患者身体功能领域的负面影响大于腹膜透析。PC的HRQoL代理报告与他们孩子的报告不同，尤其是在年长患者中。两组PC的SF-36评分相似。治疗目标未达标的程度、患者/PC代理报告中较低的特定领域评分与PC的SF-36总体健康评分之间存在关联。
4-5期慢性肾脏病患者的HRQoL根据年龄和治疗方式受到不同程度的负面影响。结果表明，HRQoL参数恶化与慢性肾脏病公认治疗目标控制不佳之间存在关联。
