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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

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          Abstract

          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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          Most cited references 58

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          Goal attainment scaling (GAS) in rehabilitation: a practical guide.

          Goal attainment scaling is a mathematical technique for quantifying the achievement (or otherwise) of goals set, and it can be used in rehabilitation. Because several different approaches are described in the literature, this article presents a simple practical approach to encourage uniformity in its application. It outlines the process of setting goals appropriately, so that the achievement of each goal can be measured on a 5-point scale ranging from -2 to +2, and then explains a method for quantifying the outcome in a single aggregated goal attainment score. This method gives a numerical T-score which is normally distributed about a mean of 50 (if the goals are achieved precisely) with a standard deviation of around this mean of 10 (if the goals are overachieved or underachieved). If desired, the approach encompasses weighting of goals to reflect the opinion of the patient on the personal importance of the goal and the opinion of the therapist or team on the difficulty of achieving the goal. Some practical tips are offered, as well as a simple spreadsheet (in Microsoft Excel) allowing easy calculation of the T-scores.
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            Down syndrome and Alzheimer's disease: Common pathways, common goals.

            In the United States, estimates indicate there are between 250,000 and 400,000 individuals with Down syndrome (DS), and nearly all will develop Alzheimer's disease (AD) pathology starting in their 30s. With the current lifespan being 55 to 60 years, approximately 70% will develop dementia, and if their life expectancy continues to increase, the number of individuals developing AD will concomitantly increase. Pathogenic and mechanistic links between DS and Alzheimer's prompted the Alzheimer's Association to partner with the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation at a workshop of AD and DS experts to discuss similarities and differences, challenges, and future directions for this field. The workshop articulated a set of research priorities: (1) target identification and drug development, (2) clinical and pathological staging, (3) cognitive assessment and clinical trials, and (4) partnerships and collaborations with the ultimate goal to deliver effective disease-modifying treatments.
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              Using the framework method for the analysis of qualitative data in multi-disciplinary health research

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                Author and article information

                Contributors
                krockwood@dgiclinical.com
                Journal
                J Patient Rep Outcomes
                J Patient Rep Outcomes
                Journal of Patient-Reported Outcomes
                Springer International Publishing (Cham )
                2509-8020
                11 January 2021
                11 January 2021
                December 2021
                : 5
                Affiliations
                [1 ]DGI Clinical Inc, 300SH-1701 Hollis St, Halifax, NS B3J 3M8 Canada
                [2 ]LuMind IDSC Foundation, Burlington, MA USA
                [3 ]GRID grid.55602.34, ISNI 0000 0004 1936 8200, Dalhousie University, ; Halifax, NS Canada
                [4 ]Advocate Medical Group, Park Ridge, IL USA
                [5 ]GRID grid.38142.3c, ISNI 000000041936754X, Massachusetts General Hospital, , Harvard University, ; Boston, MA USA
                [6 ]GRID grid.266093.8, ISNI 0000 0001 0668 7243, University of California Irvine Institute for Memory Impairments and Neurological Disorders, ; Irvine, CA USA
                Article
                278
                10.1186/s41687-020-00278-7
                7801557
                33427993
                © 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/.

                Funding
                Funded by: The LuMind IDSC Foundation
                Categories
                Research
                Custom metadata
                © The Author(s) 2021

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