Background Predictive testing (PT) for HD requires several in-person appointments. A previous interview study of individuals at risk for HD in British Columbia (BC), Canada revealed that the accessibility of PT can be a barrier for two major reasons: distance and the inflexibility of the testing process. Based on the results of this study, coupled with expert consultation, an effective and practical portable telehealth testing protocol was developed, including an informational website and locally supported telehealth appointments.
Aims The objective of this project was to conduct a pilot project to examine whether this telehealth protocol can improve access to HD PT while maintaining quality of care and support for those undergoing the process.
Methods Consented individuals underwent PT via the telehealth protocol and were asked to complete surveys throughout the testing process to capture several important factors including: overall experience of the telehealth process, information and understanding, support and accessibility of care.
Results A total of 29 individuals enrolled in the pilot study. Results reveal that patients undergoing PT via the telehealth service report a positive response to the service on a number of factors: (1) Flexibility/ease of set up of appointments; (2) Avoid expense and time related to travelling to appointments; (3) Allows support people to more easily attend the appointment; (4) Individuals can get home easily; (5) May spare unnecessary visits.
Conclusions This pilot study reveals that providing PT via telehealth improves access to PT while maintaining quality of care and support.
- Predictive testing
- Huntington disease