Development of a Goal Area Inventory for Dementia with Lewy Bodies for use in Goal Attainment Scaling   

Assessing treatment response and identifying meaningful change in dementia with Lewy bodies (DLB) is challenging due to heterogeneity in symptom presentation and disease progression. Goal Attainment Scaling (GAS), an individualized outcome measure, addresses this heterogeneity by quantifying treatment effects based on patient-specific goals and challenges. To support standardized GAS implementation while maintaining individualization, condition-specific goal inventories, i.e., structured item banks of patient-relevant treatment goals, are increasingly used. Here, we aimed to develop a DLB-specific goal inventory that captured key symptoms and functional challenges, informed by expert clinicians, and patient/caregiver perspectives. This was to be utilized in facilitating GAS. 

A dementia inventory containing 67 goal areas developed based on symptoms and challenges identified by over 4,000 clinicians, patients, and caregivers¹, was reviewed and adapted to DLB by expert clinicians through a workshop with two clinicians. The resulting draft inventory was further refined through semi-structured interviews (n=7) with patients diagnosed with DLB and/or their caregivers (n=10). Revisions were made based on patient/caregiver priorities as well as their relevance and clarity.

The initial adaptation yielded 29 goal areas. Subsequent patient and caregiver feedback informed iterative refinement, including modification of one domain title, revisions to 18 existing goal areas (including the merger of one area), and the addition of 17 new goal areas. The resulting DLB Goal Inventory comprises five domains: Movement (n = 4), Everyday Activities (n = 10), Physical Problems (n = 9), Cognition (n = 13), and Behavior (n = 11), for a total of 47 goal areas.

Incorporating patient and caregiver input substantially expanded and refined the inventory. This , highlights the central role of stakeholder perspectives in developing clinically meaningful outcome measures for DLB. The DLB Goal Inventory provides a standardized yet flexible framework for applying GAS in DLB, supporting patient-centered assessment of meaningful within-patient change across research and care settings.