Patient perceptions and knowledge of Deep Brain Stimulation (DBS) in Parkinson’s disease (PD) (KNOW-DBS)
Shilpa Chitnis1, Bilal Haque2, Nida Ahmed2, Austin Oblack4, Meagen Salinas2, Bradley McDaniels5, Nader Pouratian3, Umar Yazdani6
1Neurology, UT Southwestern.edu, 2Neurology, 3Neurosurgery, UT Southwestern, 4UT Southwestern, 5Rehab Psychology, University of North Texas, 6UT SOUTHWESTERN MEDICAL CENTER
Objective:

Identify existing knowledge gaps about DBS in PD patients with an intent to improve health outcomes. 

Background:

DBS is a safe and effective treatment for patients with advancing PD with motor fluctuations and dyskinesia. However, the surgical decision making involves a multistep complex process. In spite of adequate counseling by the neuromodulation team, patients may still experience confusion about this intricate therapy. Revealing those existing knowledge gaps is vital to improve patient understanding of this therapy with device self-adjustment alongside medical management.  

Design/Methods:

Questionnaires have a long history of utility in PD, however studies have not specifically assessed patient knowledge of DBS in PD. A survey was generated using commercial software and is being administered to patients over the next 6 months. The 23-point questionnaire utilizes Likert response options to explore patient knowledge of DBS. 

Results:

17 subjects thus far have completed the survey. The majority (64.7%) erroneously believed that DBS will alter the natural course of their PD. Most (82.4%) believe the efficacy of DBS is similar to optimal pharmacotherapy, would improve tremor (88.2%), slowness (58.8%), stiffness (64.7%), dyskinesia (52.9% ), and walking (52.9%). When asked about the potential side effects of DBS, most (94.1%) patients knew about the possibility of brain bleed or speech impairment, 76.5% acknowledged the potential for stroke and cognitive impairment, and 88.2% chose infection as a possible adverse event. Finally, 100% of respondents correctly knew that DBS does not mean that all PD medications can be eliminated, that future maintenance procedures are likely, and DBS has been shown to improve quality of life. 

Conclusions:

Although a lot of patients demonstrated sound knowledge about DBS, misconceptions are still indeed prevalent. Identification of these knowledge gaps is vital towards improving health literacy and the findings described herein will form the basis for effective educational interventions.  

10.1212/WNL.0000000000203341