Bell C M, Araki S S, Neumann P J
Program on the Economic Evaluation of Medical Technology, Center for Risk Analysis, Harvard School of Public Health, Boston, Massachusetts, USA.
Alzheimer Dis Assoc Disord. 2001 Jul-Sep;15(3):129-36. doi: 10.1097/00002093-200107000-00004.
The burden experienced by family caregivers of individuals with Alzheimer disease (AD) affects the caregivers' overall health-related quality of life (HRQOL). Assessing the influence on HRQOL is an integral part of determining the efficacy and economic attractiveness of interventions for AD. Generic preference-weighted instruments such as the Health Utilities Index Mark 2 (HUI2) are recommended for measuring HRQOL for cost-effectiveness studies. However, these instruments focus on physical attributes and have not been tested in an AD caregiver population. We administered the HUI2 to a population of 679 caregivers to people with AD at 13 community and institutional sites in the United States. We also administered the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), a caregiver time questionnaire, and a caregiver burden instrument. The mean global HUI2 utility score for caregivers was 0.87 and varied little by the affected person's setting of care and AD stage (range, 0.86-0.89; p > 0.2). The caregiver burden scales all varied by the affected person's setting of care, and some also varied by disease severity. The mental health component summary score of the SF-36 for caregivers varied across both disease stage and setting. Caregiver time increased for caregivers of AD-affected persons with more severe cognitive impairment. Generic preference-weighted instruments may not adequately capture differences in the burden of caregivers of those with AD. The development of condition-specific preference-weighted instruments may provide the means to better estimate HRQOL in AD caregivers.
阿尔茨海默病（AD）患者的家庭照护者所承受的负担会影响其整体健康相关生活质量（HRQOL）。评估对HRQOL的影响是确定AD干预措施的疗效和经济吸引力的一个重要组成部分。对于成本效益研究，推荐使用通用的偏好加权工具，如健康效用指数Mark 2（HUI2）来测量HRQOL。然而，这些工具侧重于身体属性，尚未在AD照护者群体中进行测试。我们在美国13个社区和机构场所，对679名AD患者的照护者进行了HUI2问卷调查。我们还进行了医学结局研究36项简短健康调查（SF-36）、照护者时间问卷和照护者负担工具的调查。照护者的平均全球HUI2效用评分为0.87，受影响者的照护环境和AD阶段变化不大（范围为0.86 - 0.89；p > 0.2）。照护者负担量表均因受影响者的照护环境而异，有些还因疾病严重程度而异。照护者的SF-36心理健康分量表总分在疾病阶段和照护环境方面均有所不同。对于认知障碍更严重的AD患者的照护者，其照护时间增加。通用的偏好加权工具可能无法充分反映AD患者照护者负担的差异。开发针对特定疾病的偏好加权工具可能为更好地评估AD照护者的HRQOL提供方法。
