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

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.

A systematic review of goal attainment scaling implementation practices by caregivers in randomized controlled trials

“…In some of the studies the categories in the COPM were used to complimentary fashion to help patients and caregivers with goal setting. Goal-menus or inventories have been used in goal setting in various disorders including hemophilia [ 62 ], neurogenic bladder [ 63 ], elder mistreatment [ 64 , 65 ] and dementia [ 66 ] to aid in goal setting. The goal inventory can be prepared with input from patients [ 67 ], disease experts [ 66 ], and/or both [ 63 ], with special consideration given to the conceptual model of the disease and/or the product’s proposed mechanism of action.…”

Innovating Therapies for Down Syndrome: An International Virtual Conference of the T21 Research Society

“…One approach that may work well is to track how a given treatment could help individuals attain their goals. Kenneth Rockwood (Canada) shared results pertaining the Goal Attainment Scaling, which follows change from each individual's baseline [Knox et al, 2021]. In this way, varying degrees of success, or lack of success, can be described and tracked.…”

Participation of persons with dementia and their caregivers in research

“…Goal attainment scaling is one approach to person-defined outcome measurement that has been used in dementia care research. [3][4][5][6][7][8][9] Using a five-category scale, an individual's goal attainment can be quantified according to whether the PLWD or care partner met, exceeded, or failed to meet expected goals over a specified time period. In this way, goals are individualized but measurement of the outcome (i.e., goal attainment) is standardized across the research cohort.…”

“…Several opportunities already exist to operationalize these personalized outcomes in research. Goal attainment scaling is one approach to person‐defined outcome measurement that has been used in dementia care research 3–9 . Using a five‐category scale, an individual's goal attainment can be quantified according to whether the PLWD or care partner met, exceeded, or failed to meet expected goals over a specified time period.…”