To better understand perceptions held by patients and caregivers toward deep brain stimulation (DBS) in Parkinson’s disease (PD).

Although a well-established, effective therapy in PD, DBS appears to be underutilized. Awareness and attitudes toward DBS remain poorly understood. In a recent quantitative study, PD patients reported uncertain efficacy and not having exhausted medication options as major DBS-related concerns. Other available data is limited to small qualitative reports and there are no published US-based studies exploring caregiver perspectives toward DBS.

A DBS commercial manufacturer and marketing research firm created and distributed an online quantitative survey to US-based PD patients not treated with DBS and their caregivers in April 2020. The survey included Likert-type, multiple choice and rank item questions regarding demographics, disease information, and perceptions of DBS. Data were analyzed using descriptive statistics. Chi-square tests were used to compare frequencies of responses between the PD patients and caregivers.

Of the 108 PD patient (56% female, mean age 65.4 ± 10.8) and 102 caregiver (58% female, mean age 53.8 ± 15.0) respondents, 81% and 73% respectively had previously heard of DBS, although 45% of patients had never spoken about DBS to a healthcare professional. While caregivers were more likely to report a positive impression of DBS compared to PD patients (p = 0.03), there was no significant difference in likelihood to consider DBS between groups. Concerns regarding neurosurgery, lack of physician recommendation, and uncertain benefits were the highest ranked reasons to not consider DBS, while a useful therapeutic option when medication loses effectiveness and minimal side effects were the highest ranked motivators for DBS consideration.

Most survey participants were aware and had a generally positive impression of DBS, however, concerns for neurosurgery and uncertainty regarding therapeutic potential suggest the need for greater education around modern era DBS risk, benefits, and surgical timing.