Providing predictive testing for Huntington disease via telehealth: results of a pilot study in British Columbia, Canada

Authors


  • The authors declare no conflicts of interest.

Corresponding author: Alice Hawkins, Centre for Molecular Medicine and Therapeutics, Child and Family Research Institute, University of British Columbia, 950 West 28th Ave, Vancouver, BC V5Z 4H4, Canada.

Tel.: +604 875 3823;

fax: +604 875 3840;

e-mail: alicehaw@exchange.ubc.ca

Abstract

Predictive testing (PT) for Huntington disease (HD) usually requires several in-person appointments which acts as a barrier to testing for those from remote regions. This pilot study reports the use of telehealth PT to examine whether such telehealth testing improves access to HD PT while maintaining quality of care and support. Individuals underwent PT via the telehealth protocol or standard in-person protocol and were asked to complete surveys regarding their experience. Results reveal no significant differences between the in-person-tested and telehealth-tested groups with respect to quality of care, information, counselling and support. The majority of participants in both groups stated that pre-test counselling had provided them with sufficient knowledge about the advantages and disadvantages of undergoing testing, the opportunity to ask questions, and the ability to make an informed decision. The majority of participants in both groups were satisfied by the manner in which results were delivered and stated they had received sufficient information regarding the implications of these results. This study reveals that telehealth PT improves access while maintaining quality of care and support.

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