H020 Enhancing multidisciplinary care for pre-manifest Huntington’s disease: insights from a neurology management clinic

<h3>Background</h3> Individuals with Huntington’s disease (HD) require care throughout disease course, regardless of pre-symptomatic testing status. Despite recommended follow-up after genetic counselling, barriers to accessing appropriate services during ‘pre-manifest’ HD frequently result in missed opportunities for timely healthcare interventions. Transition of individuals from Clinical Genetics to multidisciplinary care, and the role of neurology services prior to symptomatic disease, has been poorly studied. <h3>Aims</h3> This clinical audit sought to gain insight into demographics and the clinical journey of patients presenting to the newly established Neurology HD Clinic and their prior engagement with other specialist services. Methods Retrospective data collection and analysis was conducted to characterise patients attending the HD Neurology Clinic during January 2022 – April 2023. Qualitative review of individual cases sought to explore experiences of genetic counselling and pre-symptomatic testing. <h3>Results</h3> Patients with manifest HD represented 77.6% (n=45) of clinic attendees. Most patients had either undergone pre-symptomatic or diagnostic testing through Clinical Genetics, however past neurologist input was minimal. GP and community-based support provided 65% of referrals, but individual pathway analysis indicated that most patients who engaged with genetic counselling since the Neurology Clinic was established could access multidisciplinary care irrespective of a genetic or symptomatic diagnosis. <h3>Conclusions</h3> Specialist, interdisciplinary input is crucial before symptom onset to mitigate the impact of the disease progression, but not all at-risk patients were able to access neurology services. Joint coordination between Genetic Counsellors and Neurologists during pre-symptomatic testing could initiate and maintain patient relationships throughout disease stage, promoting equitable access to long-term support.