title: Developing a comprehensive, effective patient-friendly website to enhance decision making in predictive testing for Huntington disease.
abstract: OBJECTIVE
  Predictive testing for Huntington disease is a complex decision, requiring in-depth counseling, education, and evaluation. Despite the growth in Web-based decision aids and educational resources, such tools for those considering Huntington disease testing are not available. The main objective of this project was to develop a patient-friendly, comprehensive, accessible Web-based tool to provide accurate information about testing for Huntington disease.
  
  
  METHODS
  A semistructured interview study was conducted to determine the informational, educational, and support needs of those considering Huntington disease testing. A dedicated predictive testing website was subsequently developed and pilot tested.
  
  
  RESULTS
  The interview study revealed that an effective website should include interactive diagrams, video documentaries, and personal stories of others who had considered testing. The pilot test revealed that the multidimensional site was easy to navigate and understand and provided an accurate, unbiased overview of the important factors to be considered before undergoing predictive testing.
  
  
  CONCLUSIONS
  This project demonstrates the use of a mixed-method approach to develop the first tailored website dedicated to predictive testing for Huntington disease. Such an approach enabled the development of a comprehensive, accurate, and effective educational tool that supports informed decision making for people considering predictive testing for Huntington disease in an accessible, nonthreatening manner.
authors.affiliation: Centre for Molecular Medicine and Therapeutics, University of British Columbia, Child and Family Research Institute, Vancouver, British Columbia, Canada. alicehaw@exchange.ubc.ca
authors.forename: Alice K
authors.initials: AK
authors.lastname: Hawkins Virani
authors.forename: S M
authors.initials: SM
authors.lastname: Creighton
authors.forename: M R
authors.initials: MR
authors.lastname: Hayden
mesh_terms: D003376:Counseling; D003657:Decision Making; D003661:Decision Support Techniques; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D020407:Internet; D007407:Interviews as Topic; D011795:Surveys and Questionnaires