Objective: To develop and validate the Lewy Body Dementia Domain Rating Scale (LBD-DRS), a disease-specific outcome measure designed to comprehensively capture the clinical features and multidomain burden of Lewy body dementia (LBD).

Background: No validated disease-specific clinical outcome measure currently exists for Lewy body dementia (LBD). Clinical trials rely on scales developed for Alzheimer’s disease or Parkinson’s disease, which incompletely capture the complex and multidomain profile of LBD, limiting assessment of disease progression and the evaluation of candidate treatments.

Method: A structured three-round Delphi process involving international clinicians and researchers established consensus on the conceptual framework and domain structure of the LBD-DRS (consensus ≥75%). The scale was refined through steering committee input. A stakeholder workshop with people living with LBD and current or former care partners provided feedback on the proposed domains, rating structure, and interview format. In parallel, an international online survey was launched to obtain broader stakeholder feedback from patients and care partners.

Results: The Delphi process established consensus on a six-domain framework encompassing cognition, autonomic/somatic symptoms, neuropsychiatric features, sleep and wakefulness, motor symptoms, and activities of daily living. Qualitative feedback from workshop participants (4 with LBD and 10 care partners) supported development of an LBD-specific rating scale and identified benefits including tracking disease progression, improving recognition of LBD symptoms, and facilitating care planning. Participants reported that the proposed domains reflected lived experience of LBD and highlighted the importance of capturing fluctuations, sleep disturbance, and care-partner impact. Feedback suggested refinements to terminology, rating descriptions, and interview structure and duration. International survey responses from patients and care partners will be presented.

Conclusion: The LBD-DRS has been developed through international expert consensus and stakeholder engagement and is available on request. Preliminary patient and care-partner input supports the relevance of the proposed domains. International survey data will further inform scale development alongside field testing and psychometric validation for use in clinical research and therapeutic trials.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-lewy-body-dementia-domain-rating-scale-lbd-drs-patient-and-care-partner-perspectives/