La vita con la malattia di Parkinson prima e dopo la stimolazione cerebrale profonda: Evoluzione di bisogni, aspettative ed esiti percepiti

Introduction: The integration of neurotechnology, such as deep brain stimulation (DBS), into clinical practice, gives rise to challenges for translational ethics in healthcare. DBS for Parkinson's disease (PD) has been shown to mitigate motor symptoms effectively. At the same time, however, it can also exert a substantial impact on psychological and psychosocial domains [1]. These are areas that remain underexplored in research. Post-DBS patients face new challenges, including adapting to the device and coping with progressing disease stages [2], [3]. These aspects necessitate a more comprehensive approach to patient care that values individual experiences and perceptions, moving beyond disease management to encompass holistic well-being. Objectives: To investigate patients' and informal caregivers' perspectives, needs, and experiences before and after DBS. Methods: We conducted semi-structured interviews with PD patients (P) and their informal caregivers (C) at three time points: 4.1 months preoperatively (P: n=9; 2 females; C: n=8; 6 females), 8.9 months after stimulation, and 16 months post-DBS (P: n=4; 1 female; C: n=3; 1 female). Thematic analysis identified patterns in evolving expectations, challenges, and perceptions. Results: Before surgery, many reported feeling adequately informed when making the decision. Still, unrealistic expectations were also reported, as well as anxiety regarding the delicacy of the surgical procedure and its outcomes. Post-operative interviews revealed dynamic shifts in patients' perceptions of benefits, with new needs and expectations emerging as they adjusted to the device and its long-term effects. Importantly, caregivers did not always share complementary perspectives, highlighting the interdependence of patient and family experiences in adapting to DBS. Conclusions: Our results offer practical insights that can be used to enhance patient-centred care, facilitate realistic expectation management, and improve shared decision-making processes. The conclusions of this study contribute to a more comprehensive understanding of the long-term impact of DBS, advocating for a model of care that moves beyond isolated symptom management to promote comprehensive well-being.