A team led by Laura Cabrera, associate professor of engineering science and mechanics at Penn State University, has received a $1.5 million grant from the National Institutes of Health (NIH) to develop a patient-centered decision aid for individuals with Parkinson's disease considering early intervention with deep brain stimulation (DBS). The tool is designed to guide patients, providers, and caregivers through the complex decision-making process associated with this advanced neurotechnology.
Understanding Deep Brain Stimulation
DBS involves the surgical implantation of electrodes in the brain and a pulse generator, often referred to as a "brain pacemaker," under the clavicle or in the abdomen. The pulse generator delivers electrical impulses to specific brain targets, modulating brain activity. Currently, DBS is approved for movement disorders like Parkinson's disease and essential tremor, as well as treatment-resistant obsessive-compulsive disorder. Clinical trials are exploring its potential for other neurological and psychiatric conditions.
Ethical Considerations and Early Intervention
Deciding when to use neurotechnology like DBS raises ethical concerns, particularly regarding informed consent. Cabrera emphasizes that it's a "value-laden, preference-sensitive medical decision" due to the trade-offs involved. Potential benefits of early DBS include reduced medication use, lower surgical risks (which increase with age), and potentially disease-modifying effects. However, drawbacks include the risk of misdiagnosis, cumulative operative risks, and the possibility of increased life expectancy exposing patients to disease complications not addressed by the intervention.
Shared Decision-Making Approach
The decision aid will promote shared decision-making, where physicians and patients collaboratively develop a treatment plan considering the patient's values, preferences, and goals. This approach is enhanced by providing patients with tools that support their participation in the decision-making process, increasing the likelihood of a treatment decision aligned with their individual needs.
Collaborative Expertise
The research team includes Jennifer Blumenthal-Barby, a professor of medical ethics at Baylor University, with expertise in neuroethics and decision aid development; Sol De Jesus, assistant professor and associate vice chair for quality in the Penn State College of Medicine’s Neuroscience Institute, who leads the Penn State DBS clinic; and Benjamin Levi, professor of pediatrics in the Penn State College of Medicine, focused on creating online decisional tools.
