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Important but not Enough - Information about HD Related Topics and Peer and Professional Support for Young Adults

Ulrike Braisch1, Saul Martinez-Horta2, Marcy MacDonald3

  • 1Institute of Epidemiology and Medical Biometry, Ulm University, Germany.

Journal of Huntington'S Disease
|December 17, 2016
PubMed

Insights

Young adults from Huntington

Area of Science:

  • Neuroscience
  • Genetics
  • Public Health

Background:

  • Huntington's disease (HD) affects more than just those with symptoms, including gene carriers and their families.
  • Young adults in HD families have unmet needs regarding life decisions, psychological support, and medical care.

Purpose of the Study:

  • To assess young adults' perspectives on the importance and availability of HD information and support.
  • To understand attitudes towards HD research among this demographic.

Main Methods:

  • An anonymous, online questionnaire was administered in ten languages.
  • Data collected included importance and availability of HD information, support, and research attitudes using categorical and Likert scale responses.

Main Results:

  • Young adults highly value HD information and peer/professional support.
  • Most respondents reported insufficient information on legal advice and inadequate support from healthcare professionals, except for general HD info and predictive testing.
  • HD research is highly valued, but participation rates are low.

Conclusions:

  • Identified unmet needs in information and support for young adults in HD families.
  • Findings can inform strategies to improve support services and increase research participation among young adults affected by Huntington's disease.
Abstract

Keywords:
Genetic counsellingcarelegal advicelife-styleresearch participation

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