Palliative Care Interventions for Persons With Neurodegenerative Disease: A Scoping Review of Clinical Trial Study Design Features
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Summary
This summary is machine-generated.Clinical trials for neurodegenerative diseases need better guidelines. This review highlights design challenges and recommends standardized approaches for consent, proxies, adverse events, and recruitment to improve research rigor.
Area Of Science
- Palliative Care Research
- Neurodegenerative Diseases
- Clinical Trial Design
Background
- Palliative care research for neurodegenerative diseases lacks established best practice guidelines.
- This patient population presents unique challenges, including cognitive fluctuations, care partner involvement, and high adverse events, requiring specialized clinical trial designs.
Purpose Of The Study
- To describe and identify clinical trial design features in studies of neuropalliative interventions for neurodegenerative diseases.
- To highlight adaptations made for this specific patient population.
Main Methods
- A scoping review of clinical trials involving neuropalliative interventions for neurodegenerative diseases was conducted.
- Searches were performed across major databases (Cochrane, Web of Science, EMBASE, Scopus, PubMed) from 1950-2023.
- Data from 44 included articles were screened, extracted, and synthesized using a thematic framework approach.
Main Results
- Seven study design features were analyzed: consent, proxies/care partners, recruitment, retention, comparators, adverse events, and internal validity.
- Disparities were found in structured consent, use of proxies/care partners, comparator selection, and adverse event reporting.
- Most research focused on dementia, indicating a need for broader neurodegenerative disease coverage.
Conclusions
- Neuropalliative care clinical trials currently exhibit varied designs, with a predominant focus on dementia.
- Development of research guidelines for high-quality neuropalliative care clinical trials across neurodegenerative diseases is crucial.
- Recommendations include standardized capacity assessments for consent, clear definitions for care partners/proxies and adverse events, systematic comparator selection, and proactive recruitment/retention strategies.
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