Identifying and Mapping Meaningful Cognitive Symptoms and their Impacts in Huntington’s Disease

Cognitive symptoms contribute significantly to disability in Huntington’s disease (HD) and are important to assess in clinical trials. Little is known about what symptoms are considered personally meaningful to people with HD and how these symptoms affect everyday life. This study aimed to identify personally meaningful cognitive symptoms in people with HD and map these symptoms to their everyday impacts. We conducted semi-structured symptom mapping interviews with 18 people with HD before and after clinical motor diagnosis. Participants rated their symptoms from “Not important” to “Very or Most Important” and as “Not Present” to “Most or Very Bothersome”. Interview transcripts were analysed using Reflexive Thematic Analysis (RTA) to identify key impacts of cognitive symptoms and symptom maps were collated to characterise the frequency of important and bothersome symptoms. Altered problem solving was most frequently rated as important whereas memory changes were most frequently rated as bothersome. We identified three themes and eight subthemes from interviews which elucidated how participants feel cognitive symptoms are important for their everyday lives. Specifically, changes in cognition affected: (1) everyday activities; (2) sense of wellbeing; and (3) personal relationships. Overall, we found that cognitive symptoms were both important and bothersome from the perspective of people living with HD.