Do cognitive tests capture symptoms that matter to people with Huntington's disease?

The Huntington's Disease Cognitive Assessment Battery (HD-CAB) is frequently used in clinical trials; however, it is unclear whether the HD-CAB captures meaningful symptoms from patients' perspectives. We aimed to explore whether HD-CAB tests are considered meaningful to people with Huntington's disease (HD) by mapping them to relevant symptoms and impacts. Eighteen people with HD before and after clinical motor diagnosis completed a semi-structured interview with symptom mapping to hierarchically rank the importance and bothersomeness of cognitive symptoms and discussed the relevance of each test to meaningful symptoms. Reflexive Thematic Analysis (RTA) was used to explore participant perceptions of the relevance of HD-CAB tests for assessing disease progression. Content coding was used to identify the frequency of important symptoms and impacts, and we used binomial tests to determine whether there was statistically significant consensus (agreement > 50%). Our findings showed that all HD-CAB tests were viewed as meaningful by a significant majority of participants and all subtests were agreed to assess important or bothersome symptoms (p < .05). Participants identified two factors contributing to the importance of the HD-CAB tests for measuring HD changes: (1) The tests of the HD-CAB provide participants with knowledge about their abilities and disease; and (2) The tests of the HD-CAB capture changes that are important for everyday life. Overall, the HD-CAB was a meaningful cognitive assessment tool from the perspective of people with HD.