End of life wishes and concerns of people with Huntington’s disease and their caregivers

  • Jackson, Nicholas (Primary Chief Investigator (PCI))
  • Mathers, Susan (Chief Investigator (CI))
  • Stout, Julie (Chief Investigator (CI))
  • Gluyas, Catherine (Chief Investigator (CI))
  • Hosken, Ruth, Calvary Health Care Bethlehem, (Chief Investigator (CI))
  • Gregory, Heidi (Chief Investigator (CI))
  • Carlozzi, Noelle E (Chief Investigator (CI))

Project: Research

Project Description

Huntington’s disease (HD) is a genetically inherited progressive neurological
disorder. Death usually occurs around 10-20 years following the onset of motor symptoms. The importance of advance care planning in HD has been well-established. Despite this, the number of people with HD (PwHD) who have advance care directives remain low. Recent studies have found only 31-38% of PwHD have documented end of life (EoL) wishes. Overall, there is a paucity of literature that explores the views of PwHD and their caregivers regarding EoL.
StatusActive
Effective start/end date1/01/1931/12/19