背景:在正在进行的最重要的研究系列的这个阶段,旨在评估对阿尔茨海默病(AD)患者有意义的概念,我们量化了症状的重要性,影响,以及AD对有风险或患有AD的人以及AD患者的护理伙伴的结果。
方法:我们对有AD风险或患有AD的个体(第1组:有AD病理证据的认知未受损;第2组:AD危险因素和主观认知不适/轻度认知障碍;第3组:轻度AD)和中度AD(第4组)或重度AD(第5组)的护理伙伴进行了基于网络的调查。受访者对42种症状的重要性进行了评分,影响,和结果的量表范围从1(“根本不重要”)到5(“极其重要”)。
结果:在274名受访者中(70.4%为女性;63.1%为白人),超过一半的患者受访者将所有42个项目评为“非常重要”或“极其重要”,“而护理伙伴将较少的项目评为“非常重要”或“极其重要”。\"在三个病人组中,任何项目的最小(最大)平均重要性等级为3.4(4.6),表明所有项目至少都是中等到非常重要的。在中度或重度AD患者的护理伙伴中,最小(最大)平均重要性等级为2.1(4.4),表明大多数项目被评为至少中等重要。总的来说,正确服用药物,不感到沮丧或沮丧,在患者和护理伙伴中,保持安全的重要性等级最高,不管AD阶段。
结论:对受AD影响的个体的重要性概念超出了对“认知”或“功能”的共同理解,反映了保持独立的愿望,整体身心健康,情感幸福,和安全。保留这些属性可能是理解干预措施是否提供有临床意义的结果的关键。
BACKGROUND: In this phase of the ongoing What Matters Most study series, designed to evaluate concepts that are meaningful to people affected by Alzheimer\'s disease (AD), we quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD.
METHODS: We administered a web-based survey to individuals at risk for or with AD (Group 1: unimpaired cognition with evidence of AD pathology; Group 2: AD risk factors and subjective cognitive complaints/mild cognitive impairment; Group 3: mild AD) and to care partners of individuals with moderate AD (Group 4) or severe AD (Group 5). Respondents rated the importance of 42 symptoms, impacts, and outcomes on a scale ranging from 1 (\"not at all important\") to 5 (\"extremely important\").
RESULTS: Among the 274 respondents (70.4% female; 63.1% white), over half of patient respondents rated all 42 items as \"very important\" or \"extremely important,\" while care partners rated fewer items as \"very important\" or \"extremely important.\" Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6), indicating that all items were at least moderately to very important. Among care partners of people with moderate or severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4), indicating that most items were rated as at least moderately important. Overall, taking medications correctly, not feeling down or depressed, and staying safe had the highest importance ratings among both patients and care partners, regardless of AD phase.
CONCLUSIONS: Concepts of importance to individuals affected by AD go beyond the common understanding of \"cognition\" or \"function\" alone, reflecting a desire to maintain independence, overall physical and mental health, emotional well-being, and safety. Preservation of these attributes may be key to understanding whether interventions deliver clinically meaningful outcomes.