Using the EQ-5D to measure caregiver health-related quality of life in rare pediatric disease: a study in aromatic L-amino acid decarboxylase deficiency

IF 0.6 Q4 CLINICAL NEUROLOGY

Future Neurology Pub Date : 2022-06-01 DOI:10.2217/fnl-2022-0004

S. Acaster, K. Williams, H. Skrobanski, K. Buesch

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引用次数: 0

Abstract

Aims: To evaluate how well the EQ-5D-5L, a generic preference-based measure of health-related quality of life, captures caregiver burden in a rare pediatric neurotransmitter disease. Materials & methods: Caregivers (n = 14) of individuals with aromatic L-amino acid decarboxylase (AADC) deficiency completed qualitative interviews on their experience as a caregiver, the EQ-5D-5L and a background questionnaire. Qualitative and quantitative data were compared to determine whether there was concordance or discordance in the findings. Results: No caregivers reported problems with mobility and self-care in either the qualitative interviews or on the EQ-5D-5L, and there was general concordance for pain/discomfort and anxiety/depression. However, discordance was found for usual activities, with 79% reporting no problems with this dimension on the EQ-5D-5L, compared with 100% describing substantial limitations during the interviews. Conclusion: The EQ-5D-5L may not be appropriate to evaluate caregiver burden in AADC deficiency, where caregivers' perceptions of “usual activities” differ substantially from the general population.

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使用EQ-5D测量罕见儿科疾病护理人员健康相关生活质量:芳香l -氨基酸脱羧酶缺乏症的研究

目的:评估EQ-5D-5L(一种基于偏好的与健康相关的生活质量的通用测量方法)在一种罕见的儿科神经递质疾病中的护理负担。材料与方法:芳香l -氨基酸脱羧酶(AADC)缺乏症患者的照护者(n = 14)完成了关于他们作为照护者的经历、EQ-5D-5L和背景问卷的定性访谈。对定性和定量数据进行比较，以确定研究结果是否一致或不一致。结果:在定性访谈或EQ-5D-5L中，没有护理人员报告活动能力和自我护理方面的问题，并且在疼痛/不适和焦虑/抑郁方面存在普遍一致性。然而，在日常活动中发现了不一致，79%的人报告EQ-5D-5L在这个维度上没有问题，而在访谈中描述实质性限制的人是100%。结论:EQ-5D-5L可能不适合评估AADC缺乏症患者的照顾者负担，在这种情况下，照顾者对“日常活动”的看法与一般人群存在很大差异。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Future Neurology CLINICAL NEUROLOGY-

CiteScore

2.10

自引率

0.00%

发文量

期刊介绍： The neurological landscape is changing rapidly. From the technological perspective, advanced molecular approaches and imaging modalities have greatly increased our understanding of neurological disease, with enhanced prospects for effective treatments in common but very serious disorders such as stroke, epilepsy, multiple sclerosis and Parkinson’s disease. Nevertheless, at the same time, the healthcare community is increasingly challenged by the rise in neurodegenerative diseases consequent upon demographic changes in developed countries.