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Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness
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 establis...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Lippincott Williams & Wilkins
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9502738/ https://www.ncbi.nlm.nih.gov/pubmed/35641309 http://dx.doi.org/10.1212/WNL.0000000000200781 |
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author | Dubbelman, Mark A. Verrijp, Merike Terwee, Caroline B. Jutten, Roos J. Postema, Merel C. Barkhof, Frederik Berckel, Bart N.M. Gillissen, Freek Teeuwen, Vivianne Teunissen, Charlotte van de Flier, Wiesje M. Scheltens, Philip Sikkes, Sietske A.M. |
author_facet | Dubbelman, Mark A. Verrijp, Merike Terwee, Caroline B. Jutten, Roos J. Postema, Merel C. Barkhof, Frederik Berckel, Bart N.M. Gillissen, Freek Teeuwen, Vivianne Teunissen, Charlotte van de Flier, Wiesje M. Scheltens, Philip Sikkes, Sietske A.M. |
author_sort | Dubbelman, Mark A. |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9502738 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Lippincott Williams & Wilkins |
record_format | MEDLINE/PubMed |
spelling | pubmed-95027382022-09-23 Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness Dubbelman, Mark A. Verrijp, Merike Terwee, Caroline B. Jutten, Roos J. Postema, Merel C. Barkhof, Frederik Berckel, Bart N.M. Gillissen, Freek Teeuwen, Vivianne Teunissen, Charlotte van de Flier, Wiesje M. Scheltens, Philip Sikkes, Sietske A.M. Neurology Research Articles 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. Lippincott Williams & Wilkins 2022-08-30 /pmc/articles/PMC9502738/ /pubmed/35641309 http://dx.doi.org/10.1212/WNL.0000000000200781 Text en Copyright © 2022 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND) (https://creativecommons.org/licenses/by-nc-nd/4.0/) , which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. |
spellingShingle | Research Articles Dubbelman, Mark A. Verrijp, Merike Terwee, Caroline B. Jutten, Roos J. Postema, Merel C. Barkhof, Frederik Berckel, Bart N.M. Gillissen, Freek Teeuwen, Vivianne Teunissen, Charlotte van de Flier, Wiesje M. Scheltens, Philip Sikkes, Sietske A.M. Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title | Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title_full | Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title_fullStr | Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title_full_unstemmed | Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title_short | Determining the Minimal Important Change of Everyday Functioning in Dementia: Pursuing Clinical Meaningfulness |
title_sort | determining the minimal important change of everyday functioning in dementia: pursuing clinical meaningfulness |
topic | Research Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9502738/ https://www.ncbi.nlm.nih.gov/pubmed/35641309 http://dx.doi.org/10.1212/WNL.0000000000200781 |
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