SPECIFIC AIMS: I structure my aims according to the best practices of the NIH Stage Model36,37 (Fig 1): Aim 1: To adapt MCP for persons with HD (MCP-HD) by conducting focus groups among key HD stakeholders (i.e., patients, clinicians, and caregivers). Adaptation 1a (A1a): The MCP manual will require changes to the sessions' content and experiential exercises to meet the cognitive, language, and emotional needs of persons with HD. Adaptation 1b (A1b): Integration of advance care planning will be perceived as credible and acceptable. Aim 2: To evaluate the feasibility and acceptability of MCP-HD among 11 persons with premanifest and early-stage manifest HD by implementing a single-arm feasibility study. Hypothesis 2a (H2a): The intervention will be feasible to recruit and retain participants, with >= 80% completing at least five sessions with high intervention fidelity. Hypothesis 2b (H2b): The intervention will be acceptable with >= 80% of participants rating that they “completely agree” or “agree” that the intervention is appropriate, feasible, and acceptable.38
|Effective start/end date||10/1/21 → 9/30/22|
- Huntington's Disease Society of America (Agmt 11/22/2021)
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