Evaluating the Feasibility of a Personalized Endpoint in Down Syndrome‐associated Alzheimer’s Disease: Inventory‐facilitated Goal Attainment Scaling
Bibliographic record
Abstract
BACKGROUND: Evaluating health outcomes in Down syndrome-associated Alzheimer's disease (DS-AD) is challenging due to variability in baseline function and cognition. Personalized outcome assessments, like Goal Attainment Scaling (GAS), can address this gap and capture treatment responses across varying baseline states and symptom manifestations. However, implementation must be standardized through tools such as goal inventories. Here, we assessed the content validity of the DS-AD goal inventory (Knox et al., 2020, 2021) and investigated the feasibility and acceptability of inventory-facilitated GAS as a patient-centric tool to evaluate treatment response. METHOD: We conducted a prospective, 16-month, non-interventional study using the DS-AD goal inventory to facilitate GAS with caregivers of individuals with Down syndrome. The inventory included 58 goal areas distributed across behavior, cognition, daily function, executive function, and physical manifestation domains. The content validity of the goal inventory was assessed through a qualitative analysis of goal scales and alignment with the existing inventory. Goal count, goal scale completeness, and interview durations were used as feasibility indicators. An end-of-study survey evaluated acceptability. RESULT: Forty-six caregivers set 3 goals with 5-levels each and assessed goal attainment at the 3 (n =45) and 16-month follow-ups (n =43). Mean interview times were 38.6 (±10.4) minutes for goal-setting and 17.9 (±9.5) and 14.5 (±4.7) minutes for 3- and 16-month follow-ups. Out of 138 goals, 117 were initially selected from the inventory. The qualitative analysis indicated that the majority of the goals were from the Daily Function (n =65) and Behavior (n =26) domains (Figures 1&2), and that the inventory covered 125 (91%) goals. A qualitative analysis of the remaining goals (n =13) revealed diet and physical activity as additional goal areas. Survey results (n =33) indicated that caregivers had positive experiences with GAS (n =31), found their goals meaningful (n =31), valued improved clinician communication (n =30), and gained new perspectives and knowledge (n =10). CONCLUSION: Our findings indicate GAS is feasible and acceptable to caregivers, and the DS-AD goal inventory comprehensively reflects patient priorities. Additional gaps identified led to inventory enhancements, resulting in a more comprehensive resource to standardize GAS implementation in DS-AD studies.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.022 | 0.040 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".