OBJECTIVES: Essential tremor (ET) is the most common movement disorder in the US. While healthcare system burden is increasingly recognized, this study describes less understood aspects: indirect care needs, care partner involvement, and time spent on care.

METHODS: Physician-reported information on care needs was obtained from the Adelphi ET Disease Specific Programme. Linked data from care partner/patient pairs were used to evaluate care partner-reported weekly hours spent on patient care. Pearson correlations and regression models, adjusting for relevant covariates, were used to assess associations between care provision and tremor severity as measured by The Essential Tremor Rating Scale (TETRAS) Performance Subscale, Performance Item 4, and Activities of Daily Living Subscale (ADL).

RESULTS: Among ET patients with physician-reported data on care partner status, 25% (n=240/960) required care partners; those with care partners were older (mean age=70.8 vs 63.0 years, p<0.001). As TETRAS ADL scores increased (i.e., worsening tremor), the proportion of patients requiring care partners increased (TETRAS ADL 0-9: 10%, 10-19: 22%, 20-29: 33%, ≥30: 56%, p<0.001). Similar patterns were seen for the Performance Subscale and Performance Item 4. The association between care partner need and tremor severity (rs=0.32-0.37) was moderate and remained consistent upon covariate adjustment in regression models. Care partners were younger (mean=57.3 years, SD=14.4), employed/students (60.1%), and lived with the patient (81.4%). Excluding those reporting constant care, care partners provided 24.5 hours of weekly care (SD=26.1). When including care partners reporting constant care (assumed 112 hours/week), on average 43.9 weekly care hours were reported, with 58.5% providing ≥20 hours.

CONCLUSIONS: Patients with ET show substantial needs for indirect care; care needs increased with higher tremor severity, and >50% of care partners provided support equivalent to over half a work-week. Results underscore the need for new ET treatments to improve patient outcomes and alleviate indirect burden on care partners.