Penn State Health study aims to increase knowledge and use of deep brain stimulation for Parkinson’s disease in underserved populations

In 1997, deep brain stimulation (DBS) earned FDA approval for the treatment of Parkinson’s tremor. Since then, it has become an approved therapy for advanced Parkinson’s disease (PD) symptoms and earlier in disease course four years post-diagnosis, when motor complications are present.¹ Other approved indications for this procedure include Essential tremor, dystonia, obsessive compulsive disorder and refractory epilepsy.

Dr. Sol Teresa De Jesus, associate professor of neurology at Penn State College of Medicine and co-director of the Deep Brain Stimulation Program at Penn State Health Milton S. Hershey Medical Center, said despite DBS’s proven track record, it is underutilized, particularly in underrepresented groups. To increase access and use of DBS, De Jesus is performing research funded by the H.G. Barsumian, M.D., Memorial Fund to target a suspected cause of low DBS adoption rate: limited knowledge about its benefits.

“When we look at the patients who visit the clinic for movement disorders, most are Caucasian males,” De Jesus said. “We want to explore whether other populations have heard of DBS and help improve equity of DBS among all patients who could benefit from the procedure.”

Seeing the unseen patients

Although white people are more likely to experience PD than others,² patients from other races also live with the condition but are grossly underrepresented when it comes to DBS treatment. For example, white patients receive DBS five times more than Black patients,³ a statistic De Jesus and Dr. Tiffany Fisher, fellow neurologist and epileptologist at Hershey Medical Center, are hoping to change.

The physician researchers are conducting a study which runs through June 2023 to determine the cause of such racial disparity and then implement new educational opportunities to increase awareness of and access to DBS across the PD and epilepsy patient spectrum in south central Pennsylvania.

The first step is determining the community’s baseline knowledge of DBS and then exploring other key questions to uncover barriers to DBS knowledge. Those with some knowledge of DBS will be asked about their perceptions of the procedure. Based on what they find, De Jesus and Fisher will hold educational events in the communities where underrepresented patient populations live, such as Harrisburg and Lancaster. A post-event survey will ask participants to gauge the helpfulness of the events and determine if any additional information is needed to help participants make a first decision regarding DBS. Those interested in evaluation will have direct access to the clinic.

“If we put our education efforts into language that is understandable and translatable for those individuals we’re trying to reach,” De Jesus said, “it would reduce the existing barriers and improve access to care that can result in meaningful impact to overall quality of life.”

Bridging the gap between patients and clinicians

Current guidelines recommend DBS for certain patients for whom medication does not provide adequate symptomatic control of PD, or when medication adjustments cause intolerable side effects. De Jesus said it’s common for patients to take a year or longer to move from having an initial conversation about DBS to actually considering the treatment. As a result, she recommends providers introduce DBS when patients with PD are initially diagnosed, which may give them time to consider having the treatment as their condition progresses.

However, De Jesus acknowledged most providers have limited time to discuss advanced therapies with patients. To help facilitate these conversations from a patient perspective, Penn State Health offers one-hour lunch-and-learn sessions with DBS candidates. Patients learn about the procedure and can ask questions to determine whether it is a therapy that interests them. If so, they may feel encouraged to start a conversation with their primary care provider.

To make these conversations easier and more fruitful, De Jesus’s research also involves interacting with clinicians. Similar to what they offer patients, De Jesus and her team are planning an educational event for clinicians. From primary care providers to movement disorder specialists, clinicians will be invited to discuss:

• Baseline knowledge of DBS’s usefulness
• Concerns about the procedure
• How to identify PD patients who are ideal DBS candidates
• Identified or suspected barriers to patient evaluation for DBS

“By opening communication, we can help take the responsibility off the primary provider and even general neurologists and be seen as a way to supplement the care they’re providing,” De Jesus said.

Parallel research enhances the reach

Parallel to De Jesus’s research and a variety of PD clinical trials offered at Penn State Health, neuroethicist Laura Cabrera, PhD, senior research associate in the Rock Ethics Institute and Dorothy Foehr Huck and J. Lloyd Huck Chair in Neuroethics at Penn State, is investigating the missing links on the patient and provider sides of the DBS equation. Cabrera suggests a patient-centered tool that enables shared-decision making to improve communication between patient and physicians, facilitating more nuanced discussions about a patient’s values and preferences. This may help providers improve communication with patients, and identify candidates for whom DBS aligns with their values and preferences. Combined with an increased and enhanced educational outreach, the new aid has potential to bring more eligible DBS candidates symptomatic relief.

“This procedure isn’t for all types of patients with movement disorders or epilepsy,” De Jesus said. “But when offered to the appropriate candidate, DBS can lead to dramatic, long-lasting improvement. We’re hopeful that our research will help us provide such results to more underserved patients.”