Daily variation in symptoms and functioning in Huntington disease: Feasibility and variability

The day-to-day experience of symptoms and functioning are largely understudied in people with Huntington disease (HD). Real-world capture of day-to-day symptoms and functioning could be valuable as future HD outcome measures. Therefore, the purpose of this study was to 1) examine the feasibility of a weeklong intensive study design; and 2) understand the daily variation of symptoms and functioning in individuals with premanifest and manifest HD.

During this 8-day study, 52 individuals with HD completed real-time symptom reports 3 times each day (chorea, sleep, fatigue, anxiety), wore a wrist-worn device (PRO-Diary sleep and physical activity), and completed daily diaries of symptoms (chorea, sleep, fatigue, anger, depression, anxiety) and functioning (physical activity, speech/swallowing, and social participation) each night. We examined rates of missing data, and multilevel models were used to analyze data.

Rates of missing data were 23-52 % for the real-time symptom reports and 19-35 % for the daily diaries. Average PRO-Diary wear compliance was 64 % for manifest and 67 % for pre-manifest HD for sleep, and 71 % for pre-manifest and 78 % for manifest HD for physical activity. Within-subject variability was greater over the week (day-to-day median range 1.9-4.4 SDs) than over the day (within-a-day median range 0-2 SDs). Associations between baseline and real-time reports of the same constructs were generally consistent.

Rates of missing data were consistent with similar study designs in other clinical populations, supporting feasibility. Missingness was highest for the real-time symptom reports. HD participants experienced more day-to-day variation in symptoms and function, with less variability within a day, suggesting that once-daily assessments may suffice.