inklap

Improving naturalistic neuroscience with patient engagement strategies

Lucia K. Feldmann, Juliet Roudini, Andrea A. Kühn, Jeroen G. V. Habets · Frontiers in Human Neuroscience · 2024

IntroductionThe clinical implementation of chronic electrophysiology-driven adaptive deep brain stimulation (DBS) algorithms in movement disorders requires reliable representation of motor and non-motor symptoms in electrophysiological biomarkers, throughout normal life (naturalistic). To achieve this, there is the need for high-resolution and -quality chronic objective and subjective symptom monitoring in parallel to biomarker recordings. To realize these recordings, an active participation and engagement of the investigated patients is necessary. To date, there has been little research into patient engagement strategies for DBS patients or chronic electrophysiological recordings.Concepts and resultsWe here present our concept and the first results of a patient engagement strategy for a chronic DBS study. After discussing the current state of literature, we present objectives, methodology and consequences of the patient engagement regarding study design, data acquisition, and study infrastructure. Nine patients with Parkinson’s disease and their caregivers participated in the meeting, and their input led to changes to our study design. Especially, the patient input helped us desig

📖 افتح في inklap 🔗 DOI 📮 اطلب بحثاً