Telemedicine for Hd during the Covid-19 Pandemic: Results of a European Survey

ABSTRACT

Video consultations have become a viable alternative for face-to-face consultations during Covid19 pandemic and are expected to be used increasingly in the future. To date, there is little evidence to support the acceptability of these services or to document the benefits and challenges when offering online clinics to HD patients. Method We report on an EHDN WG Genetic Counselling and Testing project of 41 healthcare professionals from 15 European countries. Participants filled in a purposely-designed survey to assess the acceptability, benefits and challenges of telemedicine with HD affected and at risk individuals. The survey was active from March 2020 until March 2021. Results Respondents were geneticists (34%), neurologists (34%), genetic counsellors (15%), and others (psychologists, psychiatrists and research practitioners) (17%). Before the Covid-19 pandemic, professionals saw 4.5 HD patients per week and most (85%) never used telemedicine. During the pandemic, professionals saw 2.4 patients per week in face-toface consultations and 3.4 patients in online consultations. 85% of professionals felt that HD clinics can be done safely and effectively online. Most respondents agreed several aspects of consultations can be done safely online follow-up counselling (78%), genetic counselling for predictive testing (54%), psychological assessment (49%), psychiatric and behavioural assessment (44%). The main benefits of telemedicine perceived were and challenges were also listed and discussed at length. Conclusions and discussion Our data are encouraging in relation to the potential for virtual and hybrid consultations in HD care. We draw on both quantitative and qualitative data to discuss professionals' views on telemedicine as well as potential implications for future practice.