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K9 Families’ perspectives on the potential of a virtual MDT for patients with JHD
  1. Rachael Cann1,
  2. Oliver Quarrell1,
  3. Penny Curtis2
  1. 1Sheffield Children’s Hospital, UK
  2. 2University of Sheffield, UK


Background Telehealth encompasses a wide variety of technologies that can enhance existing health care services. Patients with Huntington’s disease and their carers/families often spent a significant amount of time travelling to appointments to seek support and advice from a wide diversity of professionals. This project therefore explores the potential of telehealth to improve JHD patients’ access to multi-disciplinary team (MDT) support.

Methods A multi-phase, mixed methods study concerned with the assessment of and satisfaction with services for JHD in the UK, with the intention of modelling alternative methods of service organisation. Fourteen families were interviewed across the UK to generate qualitative data on their views on service provision for JHD and the acceptability of a virtual MDT.

Main findings Preliminary findings indicate that families may appreciate the opportunity to not have to travel far with the young person in order to gain expert opinions on their care. However, some families valued the face to face contact with the professionals, whilst others felt that they might require some intial technical support. Whilst the data suggests that there is a requirement for increasing access to services for patients with JHD and their families, the format of delivery would have to be a key consideration.

Recommendations Telehealth may offer a clinically efficient means of communication between patients and professionals, however, the views and concerns of patients and their carers are critical to its acceptability. The poster will offer recommendations to support a virtual clinic that is both effective and user-friendly.

  • Juvenile Huntington’s Disease
  • services
  • telehealth
  • virtual clinic
  • Multi Disciplinary Team
  • qualitative study

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