F043 Identifying meaningful cognitive symptoms in Huntington’s disease: do cognitive measures capture what matters to patients and care partners?

<h3>Background</h3> 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. <h3>Aims</h3> 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. <h3>Methods/Techniques</h3> 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. <h3>Results/Outcomes</h3> 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%. <h3>Conclusions</h3> The HD-CAB assesses symptoms that are important and impactful for the daily lives of people with HD and their loved ones.

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Published
2024-09-01
DOI
https://doi.org/10.1136/jnnp-2024-ehdn.161
Primary Topic
Genetic Neurodegenerative Diseases
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article
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article

F043 Identifying meaningful cognitive symptoms in Huntington’s disease: do cognitive measures capture what matters to patients and care partners?

Jamie Adams, Jennifer R. Mammen, Julie C. Stout, Cali Roiboit
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Genetic Neurodegenerative Diseases
article

F043 Identifying meaningful cognitive symptoms in Huntington’s disease: do cognitive measures capture what matters to patients and care partners?

Jamie Adams, Jennifer R. Mammen, Julie C. Stout, Cali Roiboit
article en

Abstract

<h3>Background</h3> 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. <h3>Aims</h3> 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. <h3>Methods/Techniques</h3> 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. <h3>Results/Outcomes</h3> 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%. <h3>Conclusions</h3> The HD-CAB assesses symptoms that are important and impactful for the daily lives of people with HD and their loved ones.

Providence College (US), Rhode Island College (US), University of Rochester (US), Monash University (AU)
Openalex Percentile: Top 84%
Genetic Neurodegenerative Diseases
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