Centre for Health Economics and Medicines Evaluation, IMSCaR, College of Health and Behavioural Sciences, Bangor University, Dean Street Building, Gwynedd LL57 1UT, UK.
Health Qual Life Outcomes. 2012 Nov 26;10:142. doi: 10.1186/1477-7525-10-142.
Advisory bodies, such as the National Institute for Health and Clinical Excellence (NICE) in the UK, advocate using preference based instruments to measure the quality of life (QoL) component of the quality-adjusted life year (QALY). Cost per QALY is used to determine cost-effectiveness, and hence funding, of interventions. QALYs allow policy makers to compare the effects of different interventions across different patient groups. Generic measures may not be sensitive enough to fully capture the QoL effects for certain populations, such as carers, so there is a need to consider additional outcome measures, which are preference based where possible to enable cost-effectiveness analysis to be undertaken. This paper reviews outcome measures commonly used in health services research and health economics research involving carers of people with dementia. An electronic database search was conducted in PubMed, Medline, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, the National Health Service Economic Evaluation Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment database. Studies were eligible for inclusion if they included an outcome measure for carers of people with dementia. 2262 articles were identified. 455 articles describing 361 studies remained after exclusion criteria were applied. 228 outcome measures were extracted from the studies. Measures were categorised into 44 burden measures, 43 mastery measures, 61 mood measures, 32 QoL measures, 27 social support and relationships measures and 21 staff competency and morale measures. The choice of instrument has implications on funding decisions; therefore, researchers need to choose appropriate instruments for the population being measured and the type of intervention undertaken. If an instrument is not sensitive enough to detect changes in certain populations, the effect of an intervention may be underestimated, and hence interventions which may appear to be beneficial to participants are not deemed cost-effective and are not funded. If this is the case, it is essential that additional outcome measures which detect changes in broader QoL are included, whilst still retaining preference based utility measures such as EQ-5D to allow QALY calculation for comparability with other interventions.
顾问机构，如英国国家卫生与临床优化研究所（NICE），提倡使用偏好量表来衡量生活质量（QoL）在质量调整生命年（QALY）中的组成部分。每 QALY 的成本用于确定干预措施的成本效益，从而决定其是否获得资金。QALYs 使政策制定者能够比较不同患者群体中不同干预措施的效果。一般衡量标准可能不足以充分捕捉某些人群（如照顾者）的 QoL 影响，因此需要考虑其他结果衡量标准，这些标准尽可能是偏好量表，以便进行成本效益分析。本文综述了常用于涉及痴呆症照顾者的卫生服务研究和卫生经济学研究的结果衡量标准。在 PubMed、Medline、护理学和相关健康文献累积索引（CINAHL）、PsycINFO、英国国家卫生服务经济评价数据库（NHS EED）、效应摘要数据库（DARE）和卫生技术评估数据库中进行了电子数据库搜索。如果研究包括痴呆症照顾者的结果衡量标准，则符合纳入标准。共确定了 2262 篇文章。排除标准应用后，有 455 篇文章描述的 361 项研究仍保留下来。从研究中提取了 228 个结果衡量标准。衡量标准分为 44 个负担衡量标准、43 个掌握衡量标准、61 个情绪衡量标准、32 个生活质量衡量标准、27 个社会支持和关系衡量标准以及 21 个员工能力和士气衡量标准。仪器的选择对资金决策有影响；因此，研究人员需要根据所测量的人群和所进行的干预类型选择合适的仪器。如果仪器不够灵敏，无法检测到某些人群的变化，则干预的效果可能会被低估，因此，对于参与者来说可能有益的干预措施可能不会被认为具有成本效益，也不会获得资金。如果是这种情况，至关重要的是，需要纳入能够检测更广泛 QoL 变化的其他结果衡量标准，同时仍然保留偏好量表式的效用衡量标准，如 EQ-5D，以便与其他干预措施进行 QALY 计算的可比性。
