Kinchin Irina, Leroi Iracema, Kennelly Sean P, Kochovska Slavica, Brady Conor, Fitzhenry Deborah, McHale Cathy, Kinghorn Philip, Coast Joanna
Centre for Health Policy and Management, Trinity College Dublin, The University of Dublin, Dublin, Ireland.
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT) Centre, University of Technology, Sydney, NSW, Australia.
Front Aging Neurosci. 2022 Dec 16;14:1061247. doi: 10.3389/fnagi.2022.1061247. eCollection 2022.
Economic evaluation currently focuses almost exclusively on the maximization of health, using the Quality-Adjusted Life-Year (QALY) framework with instruments such as the EQ-5D, with a limited number of health-focused dimensions providing the assessment of health benefit. This evaluative framework is likely to be insufficient for setting priorities in dementia care because of its exclusive concern with health. Data are also often collected from the perspective of a proxy, limiting the voice of those living with dementia in decision-making. This protocol describes a research project that aims to gather the perspectives of people living with dementia, their insights, and preferences for assessing their quality of life to inform economic evaluation outcome measurement and design with a goal of creating a more robust evidence base for the value of healthcare services. Specifically, this study will elucidate what a "good life" means to people living with dementia and how well instruments currently used in economic evaluation meet this description. This project will further test the acceptability of capability wellbeing instruments as self-report instruments and compare them to generic and dementia-specific preference-based instruments.
People living with dementia, diagnosed, or waiting to receive a formal diagnosis and with the capacity to participate in research, will be invited to participate in an hour "think aloud" interview. Participants will be purposefully selected to cover a range of dementia diagnoses, age, and sex, recruited through the integrated care, geriatric, and post-diagnostic clinics at St James' and Tallaght University Hospitals and dementia support groups in the Ireland. During the interview, participants will be invited to reflect on a "good life" and "think aloud" while completing four economic quality of life instruments with a perspective that goes beyond health (AD-5D/QOL-AD, AQOL-4D, ICECAP-O, ICECAP-SCM). An interviewer will then probe areas of difficulty when completing the instruments in a semi-structured way. The analysis will identify the frequency of errors in comprehension, retrieval, judgment, and response from verbatim transcripts. Qualitative data will be analyzed using constant comparison.
The St James's Hospital and Tallaght University Hospital Joint Research Ethics Committee approved the study (Approval Date: 11 April 2022).
目前，经济评估几乎完全专注于健康最大化，采用质量调整生命年（QALY）框架，使用如EQ-5D等工具，通过有限数量的以健康为重点的维度来评估健康效益。由于该评估框架只关注健康，对于确定痴呆症护理的优先事项而言可能并不充分。数据通常也是从代理人的角度收集的，这限制了痴呆症患者在决策中的发言权。本方案描述了一个研究项目，旨在收集痴呆症患者的观点、他们对评估其生活质量的见解和偏好，为经济评估结果测量和设计提供信息，目标是为医疗服务的价值建立更有力的证据基础。具体而言，本研究将阐明 “美好生活” 对痴呆症患者意味着什么，以及目前经济评估中使用的工具在多大程度上符合这一描述。该项目还将进一步测试能力幸福工具作为自我报告工具的可接受性，并将其与通用的和特定于痴呆症的基于偏好的工具进行比较。
已确诊或等待接受正式诊断且有能力参与研究的痴呆症患者将被邀请参加一小时的 “边思考边说” 访谈。将有目的地选择参与者，以涵盖一系列痴呆症诊断、年龄和性别，通过圣詹姆斯医院和塔拉赫特大学医院的综合护理、老年病和诊断后诊所以及爱尔兰的痴呆症支持小组招募。在访谈过程中，参与者将被邀请在从健康以外的角度完成四个经济生活质量工具（AD-5D/QOL-AD、AQOL-4D、ICECAP-O、ICECAP-SCM）时，反思 “美好生活” 并 “边思考边说”。然后，访谈者将以半结构化的方式探究完成工具时遇到困难的领域。分析将从逐字记录中识别理解、检索、判断和回答方面的错误频率。定性数据将采用持续比较法进行分析。
圣詹姆斯医院和塔拉赫特大学医院联合研究伦理委员会批准了该研究（批准日期：2022年4月11日）。
