title: Healthcare experiences of families affected by Huntington disease: need for improved care.
abstract: OBJECTIVE
  To explore the healthcare experiences of families affected by Huntington disease (HD), a fatal neurodegenerative genetic disorder, and elicit their suggestions for improvement in the quality of care provided to them.
  
  
  METHODS
  24 semi-structured interviews were completed with members of families affected by HD in Eastern Canada. The sample was chosen to reflect a wide range of experiences with HD (e.g. patients, caregivers, family members at risk, but asymptomatic).
  
  
  RESULTS
  Complex needs for healthcare services and emotional supports were found. Participants expressed frustration at the lack of knowledge about HD displayed by their family physicians. They described numerous difficulties accessing appropriate healthcare and other supports, and anticipated access difficulties in the future. Participants offered several suggestions to improve the quality of care to their families, including better education of healthcare professionals about the complex nature of HD and the provision of regular follow-up support.
  
  
  CONCLUSIONS
  Health service planners and policy makers must recognize that HD is a debilitating, complicated illness requiring a high degree of care. Sustained follow-up support from knowledgeable healthcare professionals is required from the initial discovery of HD in the family, throughout a lengthy disease trajectory that normally ends with institutionalization.
authors: Clinical Epidemiology, Memorial University, St. John's, Newfoundland, Canada. holly.etchegary@med.mun.ca
authors: Holly
authors: H
authors: Etchegary