Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health & Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health & Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
Value Health. 2023 Dec;26(12):1795-1809. doi: 10.1016/j.jval.2023.07.005. Epub 2023 Aug 3.
Understanding what matters most to patients and their caregivers is fundamental to delivering high-quality care. This systematic review aimed to characterize and appraise the evidence from discrete choice experiments eliciting preferences for palliative care.
A systematic literature search was undertaken for publications up until August 2022. Data were synthesized narratively. Thematic analysis was applied to categorize attributes into groups. Attribute development, frequency, and relative importance were analyzed. Subgroup analyses were conducted to compare outcomes between patient and proxy respondents.
Seventeen studies spanning 11 countries were included; 59% of studies solely considered preferences for patients with cancer. A range of respondent groups were represented including patients (76%) and proxies (caregivers [35%], health providers [12%], and the public [18%]). A total of 117 individual attributes were extracted and thematically grouped into 8 broad categories and 21 subcategories. Clinical outcomes including quality of life, length of life, and pain control were the most frequently reported attributes, whereas attributes relating to psychosocial components were largely absent. Both patients and proxy respondents prioritized pain control over additional survival time. Nevertheless, there were differences between respondent cohorts in the emphasis on other attributes such as access to care, timely information, and low risk of adverse effects (prioritized by patients), as opposed to cost, quality, and delivery of care (prioritized by proxies).
Our review underscores the vital role of pain control in palliative care; in addition, it shed light on the complexity and relative strength of preferences for various aspects of care from multiple perspectives, which is useful in developing personalized, patient-centered models of care for individuals nearing the end of life.
了解患者及其照护者最关心的问题对于提供高质量的护理至关重要。本系统评价旨在描述和评估通过离散选择实验得出的姑息治疗偏好的证据。
系统检索截至 2022 年 8 月的出版物。数据以叙述性方式进行综合。应用主题分析将属性归类为组。分析属性的开发、频率和相对重要性。进行亚组分析以比较患者和代理应答者之间的结果。
纳入了 11 个国家的 17 项研究；59%的研究仅考虑了癌症患者的偏好。代表了一系列不同的应答者群体，包括患者（76%）和代理人（护理人员[35%]、卫生保健提供者[12%]和公众[18%]）。共提取了 117 个个体属性，并根据主题分为 8 个大类和 21 个亚类。临床结果包括生活质量、生存时间和疼痛控制是最常报告的属性，而与心理社会因素相关的属性则基本缺失。患者和代理应答者都将疼痛控制置于额外的生存时间之上。然而，在应答者群体之间，对其他属性的重视程度存在差异，如获得护理、及时的信息和低不良反应风险（患者优先考虑），而不是成本、质量和护理的提供（代理人优先考虑）。
我们的综述强调了疼痛控制在姑息治疗中的重要作用；此外，它还揭示了从多个角度对护理各个方面的偏好的复杂性和相对强度，这对于为生命即将结束的个体开发个性化、以患者为中心的护理模式是有用的。
