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Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease
BACKGROUND: As a result of advances in diagnostic testing in the field of Alzheimer disease (AD), patients are diagnosed in earlier stages of the disease, for example, in the stage of mild cognitive impairment (MCI). This poses novel challenges for a clinician during the diagnostic workup with regar...
Autores principales: | , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643768/ https://www.ncbi.nlm.nih.gov/pubmed/31287061 http://dx.doi.org/10.2196/13417 |
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author | van Maurik, Ingrid S Visser, Leonie NC Pel-Littel, Ruth E van Buchem, Marieke M Zwan, Marissa D Kunneman, Marleen Pelkmans, Wiesje Bouwman, Femke H Minkman, Mirella Schoonenboom, Niki Scheltens, Philip Smets, Ellen MA van der Flier, Wiesje M |
author_facet | van Maurik, Ingrid S Visser, Leonie NC Pel-Littel, Ruth E van Buchem, Marieke M Zwan, Marissa D Kunneman, Marleen Pelkmans, Wiesje Bouwman, Femke H Minkman, Mirella Schoonenboom, Niki Scheltens, Philip Smets, Ellen MA van der Flier, Wiesje M |
author_sort | van Maurik, Ingrid S |
collection | PubMed |
description | BACKGROUND: As a result of advances in diagnostic testing in the field of Alzheimer disease (AD), patients are diagnosed in earlier stages of the disease, for example, in the stage of mild cognitive impairment (MCI). This poses novel challenges for a clinician during the diagnostic workup with regard to diagnostic testing itself, namely, which tests are to be performed, but also on how to engage patients in this decision and how to communicate test results. As a result, tools to support decision making and improve risk communication could be valuable for clinicians and patients. OBJECTIVE: The aim of this study was to present the design, development, and testing of a Web-based tool for clinicians in a memory clinic setting and to ascertain whether this tool can (1) facilitate the interpretation of biomarker results in individual patients with MCI regarding their risk of progression to dementia, (2) support clinicians in communicating biomarker test results and risks to MCI patients and their caregivers, and (3) support clinicians in a process of shared decision making regarding the diagnostic workup of AD. METHODS: A multiphase mixed-methods approach was used. Phase 1 consisted of a qualitative needs assessment among professionals, patients, and caregivers; phase 2, consisted of an iterative process of development and the design of the tool (ADappt); and phase 3 consisted of a quantitative and qualitative assessment of usability and acceptability of ADappt. Across these phases, co-creation was realized via a user-centered qualitative approach with clinicians, patients, and caregivers. RESULTS: In phase 1, clinicians indicated the need for risk calculation tools and visual aids to communicate test results to patients. Patients and caregivers expressed their needs for more specific information on their risk for developing AD and related consequences. In phase 2, we developed the content and graphical design of ADappt encompassing 3 modules: a risk calculation tool, a risk communication tool including a summary sheet for patients and caregivers, and a conversation starter to support shared decision making regarding the diagnostic workup. In phase 3, ADappt was considered to be clear and user-friendly. CONCLUSIONS: Clinicians in a memory clinic setting can use ADappt, a Web-based tool, developed using multiphase design and co-creation, for support that includes an individually tailored interpretation of biomarker test results, communication of test results and risks to patients and their caregivers, and shared decision making on diagnostic testing. |
format | Online Article Text |
id | pubmed-6643768 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-66437682019-07-31 Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease van Maurik, Ingrid S Visser, Leonie NC Pel-Littel, Ruth E van Buchem, Marieke M Zwan, Marissa D Kunneman, Marleen Pelkmans, Wiesje Bouwman, Femke H Minkman, Mirella Schoonenboom, Niki Scheltens, Philip Smets, Ellen MA van der Flier, Wiesje M JMIR Form Res Original Paper BACKGROUND: As a result of advances in diagnostic testing in the field of Alzheimer disease (AD), patients are diagnosed in earlier stages of the disease, for example, in the stage of mild cognitive impairment (MCI). This poses novel challenges for a clinician during the diagnostic workup with regard to diagnostic testing itself, namely, which tests are to be performed, but also on how to engage patients in this decision and how to communicate test results. As a result, tools to support decision making and improve risk communication could be valuable for clinicians and patients. OBJECTIVE: The aim of this study was to present the design, development, and testing of a Web-based tool for clinicians in a memory clinic setting and to ascertain whether this tool can (1) facilitate the interpretation of biomarker results in individual patients with MCI regarding their risk of progression to dementia, (2) support clinicians in communicating biomarker test results and risks to MCI patients and their caregivers, and (3) support clinicians in a process of shared decision making regarding the diagnostic workup of AD. METHODS: A multiphase mixed-methods approach was used. Phase 1 consisted of a qualitative needs assessment among professionals, patients, and caregivers; phase 2, consisted of an iterative process of development and the design of the tool (ADappt); and phase 3 consisted of a quantitative and qualitative assessment of usability and acceptability of ADappt. Across these phases, co-creation was realized via a user-centered qualitative approach with clinicians, patients, and caregivers. RESULTS: In phase 1, clinicians indicated the need for risk calculation tools and visual aids to communicate test results to patients. Patients and caregivers expressed their needs for more specific information on their risk for developing AD and related consequences. In phase 2, we developed the content and graphical design of ADappt encompassing 3 modules: a risk calculation tool, a risk communication tool including a summary sheet for patients and caregivers, and a conversation starter to support shared decision making regarding the diagnostic workup. In phase 3, ADappt was considered to be clear and user-friendly. CONCLUSIONS: Clinicians in a memory clinic setting can use ADappt, a Web-based tool, developed using multiphase design and co-creation, for support that includes an individually tailored interpretation of biomarker test results, communication of test results and risks to patients and their caregivers, and shared decision making on diagnostic testing. JMIR Publications 2019-07-08 /pmc/articles/PMC6643768/ /pubmed/31287061 http://dx.doi.org/10.2196/13417 Text en ©Ingrid S van Maurik, Leonie NC Visser, Ruth E Pel-Littel, Marieke M van Buchem, Marissa D Zwan, Marleen Kunneman, Wiesje Pelkmans, Femke H Bouwman, Mirella Minkman, Niki Schoonenboom, Philip Scheltens, Ellen MA Smets, Wiesje M van der Flier. Originally published in JMIR Formative Research (http://formative.jmir.org), 08.07.2019. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org, as well as this copyright and license information must be included. |
spellingShingle | Original Paper van Maurik, Ingrid S Visser, Leonie NC Pel-Littel, Ruth E van Buchem, Marieke M Zwan, Marissa D Kunneman, Marleen Pelkmans, Wiesje Bouwman, Femke H Minkman, Mirella Schoonenboom, Niki Scheltens, Philip Smets, Ellen MA van der Flier, Wiesje M Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title | Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title_full | Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title_fullStr | Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title_full_unstemmed | Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title_short | Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease |
title_sort | development and usability of adappt: web-based tool to support clinicians, patients, and caregivers in the diagnosis of mild cognitive impairment and alzheimer disease |
topic | Original Paper |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6643768/ https://www.ncbi.nlm.nih.gov/pubmed/31287061 http://dx.doi.org/10.2196/13417 |
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