REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease

Abstract

Background: People with pre-symptomatic Huntington's disease (PSHD) carry a mutant gene that causes a progressive brain disease, with their offspring at 50% risk of developing Huntington's disease (HD). People know they will develop the condition, but not when, and services are generally not designed to care for people in this anticipatory stage. Aims: To explore the support and educational needs of people in the PSHD stage and assess their experience of attending a virtual group. Methods: User-driven virtual sessions followed by anonymous surveys. Findings: Four main themes were identified: 1) what to expect from HD in the future; 2) tips to keep healthy; 3) how HD is impacting your life and the life of others; and 4) research update – requested at every session. Attendees described the positive impact of the group. Conclusions: User-driven virtual group sessions show a positive impact on PSHD patients and can be a useful resource to support other people with complex diseases remotely.