Despite remarkable research being conducted that is aimed at a cure and reducing
symptoms, more encompassing research is needed to better understand the impact
of the disease on the lives of patients and their families, appropriate settings
to care for patients and the role of clinicians in providing care.
The Promoting Excellence Huntington's Disease Peer Workgroup recommends that
the National Institutes of Health (NIH) and other researchers:
- Study patients' barriers to adopting advance care plans and advance
care directives to improve use and utility of the documents.
- Conduct population-based
epidemiological research in HD.
- Identify the demographic features of people
with HD, their caregivers, and the types of professionals who care for people
with HD, by stage of illness.
This data can support development of recommendations for appropriate allocation
of health care resources.
- Study caregiver demographics and the relationship
burden and the clinical features of HD.
- Identify caregiver issues in HD to provide
better medical management
of people with HD and their families.
- Compare the chronic versus home care settings
to identify risk factors for placement in long-term care facilities, demographics
of patients and resources
required in each setting.
- Conduct interventional studies employing rehabilitative
services to provide data about ways rehabilitative services can improve care
- Study the risk factors for imminent death in order to provide better
access to hospice care until the Centers for Medicare and Medicaid Services
(CMS) change the six-month life expectancy rule to receive reimbursement
provided by the Medicare Hospice Benefit (explained in detail in Appendix
- Develop evidence-based guidelines that clinicians
can use to assess capacity in arenas such as decision-making abilities.
the collision rates among drivers with HD to assess traffic safety problems
and to examine the consequences of driving cessation.
[ Go Up ]
Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.