Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness.

Autor:	Dubbelman MA; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands. m.dubbelman@amsterdamumc.nl., Verrijp M; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Terwee CB; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Jutten RJ; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Postema MC; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Barkhof F; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Berckel BNM; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Gillissen F; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Teeuwen V; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Teunissen C; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., van de Flier WM; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Scheltens P; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands., Sikkes SAM; From the Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (M.A.D., M.V., M.C.P., F.G., V.T., W.M.F., P.S., S.A.M.S.); Department of Epidemiology and Data Science, Amsterdam UMC, The Netherlands (C.B.T., W.M.F.); Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston (R.J.J.); Department of Radiology and Nuclear Medicine, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, The Netherlands (F.B., B.N.M.B.); Institutes of Neurology and Healthcare Engineering, University College London, United Kingdom (F.B.); Neurochemistry Laboratory, Department of Clinical Chemistry, Amsterdam Neuroscience, Amsterdam UMC, Vrije Universiteit Amsterdam, The Netherlands (C.T.); and Faculty of Behavioural and Movement Sciences (S.A.M.S.), Clinical Developmental Psychology & Clinical Neuropsychology, Vrije Universiteit Amsterdam, the Netherlands.
Jazyk:	angličtina
Zdroj:	Neurology [Neurology] 2022 Aug 30; Vol. 99 (9), pp. e954-e964. Date of Electronic Publication: 2022 May 31.
DOI:	10.1212/WNL.0000000000200781
Abstrakt:	Background and Objectives: Decline in everyday functioning is a key clinical change in Alzheimer disease and related disorders (ADRD). An important challenge remains the determination of what constitutes a clinically meaningful change in everyday functioning. We aimed to investigate this by establishing the minimal important change (MIC): the smallest amount of change that has a meaningful effect on patients' lives. We retrospectively investigated meaningful change in a memory clinic cohort. Methods: In the first, qualitative part of the study, community-recruited informal caregivers of patients with ADRD and memory clinic clinicians completed a survey in which they judged various situations representing changes in everyday functioning. Their judgments of meaningful change were used to determine thresholds for MIC, both for decline and improvement, on the Amsterdam Instrumental Activities of Daily Living (IADL) Questionnaire. In the second, quantitative part, we applied these values in an independent longitudinal cohort study of unselected memory clinic patients. Results: MIC thresholds were established at the average threshold of caregivers (N = 1,629; 62.4 ± 9.5 years; 77% female) and clinicians (N = 13): -2.2 points for clinically meaningful decline and +5.0 points for clinically meaningful improvement. Memory clinic patients (N = 230; 64.3 ± 7.7 years; 39% female; 60% dementia diagnosis) were followed for 1 year, 102 (45%) of whom showed a decline larger than the MIC, after a mean of 6.7 ± 3.5 months. Patients with a dementia diagnosis and more atrophy of the medial temporal lobe had larger odds (odds ratio [OR] = 3.4, 95% CI [1.5-7.8] and OR = 5.0, 95% CI [1.2-20.0], respectively) for passing the MIC threshold for decline than those with subjective cognitive complaints and no atrophy. Discussion: We were able to operationalize clinically meaningful decline in IADL by determining the MIC. The usefulness of the MIC was supported by our findings from the clinical sample that nearly half of a sample of unselected memory clinic patients showed a meaningful decline in less than a year. Disease stage and medial temporal atrophy were predictors of functional decline greater than the MIC. Our findings provide guidance in interpreting changes in IADL and may help evaluate treatment effects and monitor disease progression. (Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)
Databáze:	MEDLINE
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