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Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms

BACKGROUND: As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of function vary before the onset of dementia. Goal Attainment Scaling (GAS), an i...

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Autores principales: Knox, Kari, Stanley, Justin, Hendrix, James A., Hillerstrom, Hampus, Dunn, Taylor, Achenbach, Jillian, Chicoine, Brian A., Lai, Florence, Lott, Ira, Stanojevic, Sanja, Howlett, Susan E., Rockwood, Kenneth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2021
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Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7801557/
https://www.ncbi.nlm.nih.gov/pubmed/33427993
http://dx.doi.org/10.1186/s41687-020-00278-7
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author Knox, Kari
Stanley, Justin
Hendrix, James A.
Hillerstrom, Hampus
Dunn, Taylor
Achenbach, Jillian
Chicoine, Brian A.
Lai, Florence
Lott, Ira
Stanojevic, Sanja
Howlett, Susan E.
Rockwood, Kenneth
author_facet Knox, Kari
Stanley, Justin
Hendrix, James A.
Hillerstrom, Hampus
Dunn, Taylor
Achenbach, Jillian
Chicoine, Brian A.
Lai, Florence
Lott, Ira
Stanojevic, Sanja
Howlett, Susan E.
Rockwood, Kenneth
author_sort Knox, Kari
collection PubMed
description BACKGROUND: As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of function vary before the onset of dementia. Goal Attainment Scaling (GAS), an individualized patient-reported outcome, can aid in monitoring disease progression and treatment effectiveness in adults with DS. Here, with clinical input, a validated dementia symptom menu was revised to facilitate GAS in adults living with Down Syndrome-associated Alzheimer’s disease (DS-AD). METHODS: Four clinicians with expertise in DS-AD and ten caregivers of adults living with DS-AD participated in semi-structured interviews to review the menu. Each participant reviewed 9–15 goal areas to assess their clarity and comprehensiveness. Responses were systematically and independently coded by two researchers as ‘clear’, ‘modify’, ‘remove’ or ‘new’. Caregivers were encouraged to suggest additional items and recommend changes to clarify items. RESULTS: Median caregiver age was 65 years (range 54–77). Most were female (9/10) with ≥15 years of education (10/10). Adults with DS-AD had a median age of 58 years (range 52–61) and either a formal diagnosis (6/10) or clinical suspicion (4/10) of dementia. The initial symptom menu consisted of 67 symptoms each with 2–12 descriptors (589 total). The clinicians’ adaptation yielded 58 symptoms each with 4–17 descriptors (580 total). Of these 580 descriptors, caregivers identified 37 (6%) as unclear; these were reworded, and one goal area (4 descriptors) was removed. A further 47 descriptors and one goal area were added to include caregiver-identified concepts. The final menu contained 58 goal areas, each with 7–17 descriptors (623 total). CONCLUSIONS: A comprehensive symptom menu for adults living with DS-AD was developed to facilitate GAS. Incorporating expert clinician opinion and input from caregivers of adults with DS-AD identified meaningful items that incorporate patient/caregiver perspectives.
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spelling pubmed-78015572021-01-21 Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms Knox, Kari Stanley, Justin Hendrix, James A. Hillerstrom, Hampus Dunn, Taylor Achenbach, Jillian Chicoine, Brian A. Lai, Florence Lott, Ira Stanojevic, Sanja Howlett, Susan E. Rockwood, Kenneth J Patient Rep Outcomes Research BACKGROUND: As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of function vary before the onset of dementia. Goal Attainment Scaling (GAS), an individualized patient-reported outcome, can aid in monitoring disease progression and treatment effectiveness in adults with DS. Here, with clinical input, a validated dementia symptom menu was revised to facilitate GAS in adults living with Down Syndrome-associated Alzheimer’s disease (DS-AD). METHODS: Four clinicians with expertise in DS-AD and ten caregivers of adults living with DS-AD participated in semi-structured interviews to review the menu. Each participant reviewed 9–15 goal areas to assess their clarity and comprehensiveness. Responses were systematically and independently coded by two researchers as ‘clear’, ‘modify’, ‘remove’ or ‘new’. Caregivers were encouraged to suggest additional items and recommend changes to clarify items. RESULTS: Median caregiver age was 65 years (range 54–77). Most were female (9/10) with ≥15 years of education (10/10). Adults with DS-AD had a median age of 58 years (range 52–61) and either a formal diagnosis (6/10) or clinical suspicion (4/10) of dementia. The initial symptom menu consisted of 67 symptoms each with 2–12 descriptors (589 total). The clinicians’ adaptation yielded 58 symptoms each with 4–17 descriptors (580 total). Of these 580 descriptors, caregivers identified 37 (6%) as unclear; these were reworded, and one goal area (4 descriptors) was removed. A further 47 descriptors and one goal area were added to include caregiver-identified concepts. The final menu contained 58 goal areas, each with 7–17 descriptors (623 total). CONCLUSIONS: A comprehensive symptom menu for adults living with DS-AD was developed to facilitate GAS. Incorporating expert clinician opinion and input from caregivers of adults with DS-AD identified meaningful items that incorporate patient/caregiver perspectives. Springer International Publishing 2021-01-11 /pmc/articles/PMC7801557/ /pubmed/33427993 http://dx.doi.org/10.1186/s41687-020-00278-7 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
spellingShingle Research
Knox, Kari
Stanley, Justin
Hendrix, James A.
Hillerstrom, Hampus
Dunn, Taylor
Achenbach, Jillian
Chicoine, Brian A.
Lai, Florence
Lott, Ira
Stanojevic, Sanja
Howlett, Susan E.
Rockwood, Kenneth
Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title_full Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title_fullStr Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title_full_unstemmed Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title_short Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms
title_sort development of a symptom menu to facilitate goal attainment scaling in adults with down syndrome-associated alzheimer’s disease: a qualitative study to identify meaningful symptoms
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7801557/
https://www.ncbi.nlm.nih.gov/pubmed/33427993
http://dx.doi.org/10.1186/s41687-020-00278-7
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