ArticleJournal of patient-reported outcomes2021
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.
Article in Journal of patient-reported outcomes, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 11 citations in OpenAlex.
- A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials.Journal of patient-reported outcomes · 2024Pooled it
- Clinician and Researcher Experiences with Goal Attainment Scaling: A Qualitative Study on Opportunities and Challenges for Personalized Outcome Assessments.Patient related outcome measures · 2025Article
- Innovating Therapies for Down Syndrome: An International Virtual Conference of the T21 Research Society.Molecular syndromology · 2023Article
- Cognitive outcome measures for tracking Alzheimer's disease in Down syndrome.International review of research in developmental disabilities · 2022Article
- Participation of persons with dementia and their caregivers in research.Journal of the American Geriatrics Society · 2021Review
Corrections and comments
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Authors and funding
12 authors at 4 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAs 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).
methodsFour 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.
resultsMedian 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).
conclusionsA 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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