Assessing what matters most to patients with or at risk for Alzheimer's and care partners: a qualitative study evaluating symptoms, impacts, and outcomes
Assessing what matters most to patients with or at risk for Alzheimer's and care partners: a qualitative study evaluating symptoms, impacts, and outcomes
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DOI：
10.1186/s13195-020-00659-6
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发表时间：
2020-07-30
影响因子：
9
通讯作者：
Hauber, Brett
中科院分区：
文献类型：
--
作者：
DiBenedetti, Dana B.;Slota, Christina;Hauber, Brett
最重要的是什么（WMM）的研究开始评估症状，AD相关的影响，治疗相关的需求，偏好和优先级之间的个人或阿尔茨海默病（AD）的风险和他们的护理合作伙伴。这一定性研究阶段的目标是确定一套全面的概念，利益是有意义的个人在整个AD连续。方法对60名临床转诊的个人和护理伙伴进行了5个AD阶段的访谈（各n = 12）：组1（具有AD病理学的非临床受损个体），第2组（具有轻度认知损害和AD病理学的个体），组3组4（患有轻度AD的个体）、组4（患有中度AD的个体及其护理伙伴）和组5（患有重度AD的个体的护理伙伴）。访谈由经验丰富的访谈者进行，录音和转录。在每次访谈中确定主导趋势，并在随后的访谈中进行比较，以产生描述AD症状、影响和预期治疗结果的主题或模式。结果所有参与者都赞同当前与记忆有关的问题;五组中几乎所有参与者（n = 55; 92%）都赞同与沟通和语言有关的症状。第1-3组报告了对情绪/情感的影响（n = 23; 64%）和社交活动或外向性的减少（n = 17; 47%）。总体样本报告的当前和未来担忧包括记忆（n = 48; 80%）、依赖（n = 40; 67%）和“其他”担忧（n = 33; 55.0%）（例如，对未来的不确定性，给他人带来负担）。最期望的AD治疗结局是记忆改善或恢复（n = 40; 67%）和停止AD进展（n = 35; 58.3%）。在整个AD连续体中，观察到患者和护理伙伴在症状、影响和期望的治疗结果方面存在组水平差异。结论认知功能问题，特别是在记忆和沟通，是目前即使在临床前和早期AD，包括那些没有正式的AD诊断。虽然AD的影响在疾病严重程度谱中各不相同，但改善记忆和疾病改善是所有5个AD阶段的参与者认为最重要的治疗结果。传统上用于AD临床试验的神经心理学评估可能无法评估对患者和护理伙伴重要的微妙概念。这项研究的结果将告知第二阶段的WMM项目的定量研究，以引出这些感兴趣的概念的相对重要性的人在风险和生活与AD和他们的护理伙伴。
Background The What Matters Most (WMM) study was initiated to evaluate symptoms, AD-related impacts, treatment-related needs, preferences, and priorities among individuals with or at risk for Alzheimer's disease (AD) and their care partners. The objective of this qualitative study phase was to identify a comprehensive set of concepts of interest that are meaningful to individuals across the AD continuum. Methods Interviews were conducted with 60 clinically referred individuals and care partners across 5 AD stages (n = 12 each): group 1 (non-clinically impaired individuals with AD pathology), group 2 (individuals with mild cognitive impairment and AD pathology), group 3 (individuals with mild AD), group 4 (individuals with moderate AD and their care partners), and group 5 (care partners of individuals with severe AD). Interviews were conducted by experienced interviewers, audio-recorded, and transcribed. Dominant trends were identified in each interview and compared across subsequent interviews to generate themes or patterns in descriptions of AD symptoms, impacts, and desired treatment outcomes. Results All participants endorsed current issues related to memory; nearly all participants (n = 55; 92%) across the five groups endorsed symptoms related to communication and language. Groups 1-3 reported an impact on mood/emotions (n = 23; 64%) and a decrease in social activities or outgoingness (n = 17; 47%). Current and future concerns reported by the overall sample included memory (n = 48; 80%), dependence (n = 40; 67%), and "other" concerns (n = 33; 55.0%) (e.g., uncertainty about the future, burdening others). The most desired AD treatment outcomes were improvement or restoration of memory (n = 40; 67%) and stopping AD progression (n = 35; 58.3%). Group-level differences were observed in the symptoms, impacts, and desired treatment outcomes among patients and care partners across the AD continuum. Conclusions Cognitive functioning issues-particularly in memory and communication-are present even in preclinical and early-stage AD, including among those without a formal AD diagnosis. While the impacts of AD vary across the disease-severity spectrum, improved memory and disease modification were treatment outcomes considered most important to participants across all 5 AD stages. Neuropsychological assessments traditionally used in AD clinical trials may not evaluate the often-subtle concepts that are important to patients and care partners. Results from this study will inform the second phase of the WMM project-a quantitative study to elicit the relative importance of these concepts of interest to people at risk for and living with AD and their care partners.