The Impact of Deep Brain Stimulation on the Embarrassment and Self-Esteem of Patients with Essential Tremor
Akanksha Dave1, Jessica Frey2, Jun Yu3, Janine Lemos Melo Lopes3, Christopher Hess4
1University of Florida, 2West Virginia University, 3UF Norman Fixel Institute for Neurological Diseases, 4University of Florida Fixel Institute for Neurological Diseases
Objective:
To examine how Deep Brain Stimulation (DBS) influences embarrassment and self-esteem in patients with essential tremor (ET) and assess caregiver impressions.
Background:
Social embarrassment is one of the reasons that patients with ET choose to have DBS surgery. However, studies have not explicitly evaluated how DBS influences embarrassment and self-esteem following surgery.
Design/Methods:
This prospective survey-based cohort study assessed embarrassment and self-esteem in patients with ET (N=15) who were eligible to receive DBS. The Essential Tremor Embarrassment Assessment (ETEA), Rosenberg Self-Esteem Scale, and Bain and Findley Tremor Activities of Daily Living scale were administered at two time points: before DBS (T0) and 3 months following DBS surgery (T1). Semi-structured interviews were conducted at T0 and T1 and analyzed thematically. Clinical Global Impression (CGI) scales were administered at T0 and T1 to both patients and caregivers to assess how DBS influences perception of patient symptoms.
Results:
Demographically, the average age was 71.27 years and 8/15 were female. The average duration of ET was 34 years and 80% presented with bilateral onset. At T0, patients were most embarrassed with eating, drinking, and writing activities, only 1/15 patients reported low self-esteem, and caregiver perceptions of the patient’s quality of life were poorer than patient impressions. Females had higher embarrassment scores (M=13.9, F=26.4, p=0.15) and lower self-esteem scores (M=22.8, F=20.0, p=0.27) compared to males. Patients with unilateral onset had significantly lower self-esteem compared to patients with bilateral onset (unilateral=16.0, bilateral=22.6, p=0.011). Thematic analysis revealed activity modification contributes to feelings of embarrassment and patients with severe tremors were more likely to give up hobbies.
Conclusions:
These findings emphasize how embarrassment impacts quality of life and provide greater insight into which features of ET are associated with higher levels of embarrassment and lower self-esteem. Data collection and analysis at T1 is ongoing, with an expected enrollment of 40 total patients.