A qualitative study of caregiver and patient perspectives on ethical and social issues in deep brain stimulation for Parkinson's disease

Renseignements sur le financement
Canadian Institutes of Health Research
  • Type de subvention: Bourse à la maîtrise : bourse d'études supérieures du Canada Frederick Banting et Charles Best
  • Année: 2010/11
  • Financement total: $17,500
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Sommaire du projet

Deep-brain stimulation (DBS) is a viable treatment for Parkinson's disease (PD) and Essential Tremor (ET) that offers advantages over drug therapy, especially for later disease stages. Since the approval of this latter technology by the FDA in 1997, over 35 000 patients in numerous countries have received deep brain stimulation with improved quality-of-life in most patients. Recent studies have expanded the use of neurostimulation for neuropsychiatric illnesses including treatment-resistant depression, Many important ethical and social issues arise from these neurostimulation-based surgical interventions in PD and beyond. The high costs of such procedures may create challenges for patients, providers, and healthcare systems. Securing consent for last-resort innovative interventions is another area of ethical significance given enthusiastic media response to DBS in PD. In spite of the dynamic emergence and extension of neurostimulation and related ethical and social challenges, there are few if any empirical studies identifying and characterizing the ethical and social landscape of both current and emerging practices. Of particular ethical importance is the need to understand the experience of patients and caregivers. Accordingly, in this research project, we will: 1. Identify and characterize ethical and social issues in the application of deep brain stimulation in Parkinson's disease based on both (a) patient and (b) caregiver perspectives and experiences; 2. Identify and initiate relevant practice changes in the ethical use of deep brain stimulation in Parkinson's disease.

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