A Mixed-methods Study of Deep Brain Stimulation's Temporal Impact on Parkinson’s Disease Patients: Insights from Short-, Medium-, and Long-term Experiences

Introduction Deep brain stimulation (DBS) is a well-established neurosurgical treatment and is considered the standard of care for refractory Parkinson's disease (PD). While the evaluation of DBS outcomes is often focused on therapeutic efficacy and motor improvement, this approach overlooks patients' daily functioning and their adaptation to living with the device over time. Objective This study aimed to explore the lived experiences of patients with varying durations of DBS treatment—short-term, medium-term, and long-term—focusing on satisfaction, concerns, and the emotional trajectory post-surgery. Methods A mixed-methods, cross-sectional study design was adopted, combining qualitative interviews and quantitative semantic network analysis to investigate patients’ journey with DBS. Patients were categorized into three groups of experience, based on the time spent with the device (short, medium, and long-term), and their narratives about surgical experiences, management preferences, and emotional adjustments were explored. Results Regardless of the time passed with the device, patient satisfaction and motivation remained consistent, alleviating concerns about the potential negative impact of DBS on the individual. Findings demonstrated a need for timely education about the realistic expectations of DBS and the changing demands of PD management. The study revealed diverse surgical experiences and preferences for treatment strategies, emphasizing the importance of tailored support at each stage of the DBS journey. Conclusion This study reveals that the lived experiences of patients implanted with DBS can have different nuances at different time periods. Furthermore, it highlights the value of integrating qualitative and quantitative approaches to better understand patient experiences with the treatment. Our findings suggest significant implications for health policy, personalized medicine, and enhancing the doctor-patient relationship by promoting realistic expectations and individualized patient support.