Objective: To develop a patient-centered care (PCC) tool for Parkinson’s Disease (PD) patients going for Deep Brain Stimulation (DBS) surgery.

Background: PCC aims to improve health outcome and patient satisfaction by incorporating patient perspective and knowledge into medical decision making. Currently, a PCC tool does not exist for DBS selection process. Therefore, we developed a web-based tool with responsive design that targets individual PD patients’ symptoms and educate them about the likelihood of symptom improvement. This tool allows us to improve health outcome by improving patient knowledge and incorporating patient expectation for joint decision making.

Method: We recruited PD patients aged 18-70 referred for DBS assessment. We introduced them to a computer application that allowed them to select individual PD symptoms and learn about the likelihood of target symptom improvement. A pre and post application questionnaire was used to assess their knowledge and expectations of DBS. Patients who chose to proceed with further assessment are evaluated by the DBS team. Those selected and completed DBS surgery are given a follow up questionnaire to assess their symptom improvement, patient satisfaction, goal attainment, and quality of life improvement.

Results: We recruited 62 patients [table 1]. Most bothersome motor and non-motor symptoms are summarized in [table 2]. The reported motor and non-motor symptoms are summarized in [table 3A an 3B]. All patients found the application helpful as an educational tool at the initial DBS assessment. Patients had good knowledge of motor symptoms that respond to DBS prior to the application and had improved understanding of symptoms that don’t respond to DBS after the application [figure 1]. After the application, patients had more realistic goals for symptom reduction. At 12 months post DBS, most patients agreed that DBS was the right decision.  Many patients found the application helpful for setting realistic goals and would recommend it to other patients.

Conclusion: To our knowledge, this is the first PCC tool for DBS candidate selection. Our results showed that patients using the application had improved knowledge and expectations of DBS outcomes. This application acts as an educational tool for all PD patients and allows them to provide their perspective into medical decision making to assist with goal attainment.

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-centered-decision-making-tool-for-deep-brain-stimulation-in-parkinsons-disease-and-outcome-and-satisfaction-assessment/