Department of Neurology, Amsterdam Neuroscience, Alzheimer Center Amsterdam, Vrije Universiteit Amsterdam, Amsterdam UMC, Location VUmc, P.O. Box 7057, 1007 MB, Amsterdam, The Netherlands.
Department of Epidemiology and Data Science, Amsterdam UMC, Amsterdam, The Netherlands.
Health Qual Life Outcomes. 2022 Mar 24;20(1):47. doi: 10.1186/s12955-022-01958-2.
Everyday functioning is a clinically relevant concept in dementia, yet little is known about the clinical meaningfulness of scores on functional outcome measures. We aimed to establish clinically meaningful scoring categories for the Amsterdam Instrumental Activities of Daily Living Questionnaire (A-IADL-Q), representing no, mild, moderate and severe problems in daily functioning.
Informal caregivers (n = 6) of memory-clinic patients and clinicians (n = 13), including neurologists and nurse specialists, working at various memory clinics in The Netherlands. In focus groups, participants individually ranked nine summaries of fictional patients from least to most impairment in daily functioning. Then, they placed bookmarks to demarcate the thresholds for mild, moderate and severe problems. Individual bookmark placements were then discussed to reach consensus. Clinicians completed a survey in which they placed bookmarks, individually.
While individual categorizations varied somewhat, caregivers and clinicians generally agreed on the thresholds, particularly about the distinction between 'no' and 'mild' problems. Score categories were no problems (T-score ≥ 60), mild problems (T-score 50-59), moderate problems (T-score 40-49), and severe problems in daily functioning (T-score < 40), on a scale ranging 20-80.
Our findings provide categories for determining the level of functional impairment, which can facilitate interpretation of A-IADL-Q scores. These categories can subsequently be used by clinicians to improve communication with patients and caregivers.
日常功能是痴呆症中一个具有临床相关性的概念，但对于日常生活功能量表评分的临床意义知之甚少。我们旨在为阿姆斯特丹工具性日常生活活动问卷（A-IADL-Q）建立具有临床意义的评分类别，代表日常生活功能中无、轻度、中度和重度问题。
我们邀请了荷兰各地记忆诊所的非专业护理人员（n=6）和临床医生（n=13），包括神经科医生和护士专家，参加焦点小组。在焦点小组中，参与者单独将 9 名虚构患者的摘要按照日常功能障碍的严重程度由低到高进行排序。然后，他们用书签标记轻度、中度和重度问题的阈值。随后讨论个人书签的放置位置以达成共识。临床医生单独完成了一份书签放置的调查问卷。
虽然个人分类略有不同，但护理人员和临床医生对这些阈值普遍达成了共识，特别是在“无”和“轻度”问题之间的区别上。将评分分为无问题（T 分数≥60）、轻度问题（T 分数 50-59）、中度问题（T 分数 40-49）和严重问题（T 分数<40），评分范围为 20-80。
我们的发现为确定功能损伤水平提供了分类，这有助于解释 A-IADL-Q 的评分。这些类别随后可由临床医生用于改善与患者和护理人员的沟通。
