F043 Identifying meaningful cognitive symptoms in Huntington’s disease: do cognitive measures capture what matters to patients and care partners?
Year: 2024
Type: conference-paper
Abstract: Background The Huntington’s Disease Cognitive Assessment Battery (HD-CAB) is frequently used in endpoint strategies for clinical trials in Huntington’s disease (HD). Currently, it is unclear whether the HD-CAB captures meaningful and impactful symptoms. Aims The aim of this study was to identify meaningful cognitive symptoms in HD and their impacts and map them to the tests of the HD-CAB. Methods/Techniques Twenty-five participants including participants with HD (n = 16) and care partners (n = 9) participated in this study. Participants completed a semi-structured interview with symptom mapping to hierarchically rank the importance and functional impact of cognitive symptoms in HD. HD participants also completed the HD-CAB and discussed the relevance of each test to personally meaningful symptoms. Reflexive Thematic Analysis (RTA) was used to explore participant perceptions and content coding was used to identify the frequency of important and impactful symptoms. Results/Outcomes Of the cognitive domains assessed by the HD-CAB, memory and processing speed were rated as most important and impactful by HD participants and care partners, respectively. HD participants mapped the impact of cognitive symptoms captured by the HD-CAB to socialisation, communication, domestic activities, leisure, work, and wellbeing whereas care partners reported increased caregiver burden and greater difficulty with socialisation. All subtests of the HD-CAB assessed important or bothersome symptoms for more than half of HD participants, with agreement ranging from approximately 60 to 100%. Conclusions The HD-CAB assesses symptoms that are important and impactful for the daily lives of people with HD and their loved ones.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402374633