Parkinson's disease (PD) has a great impact on the physical and mental health that can lead to loss of autonomy and self-esteem, altered relationships, and social isolation. Furthermore, severely affected patients present a challenge to their families and health professionals. Two important current clinical treatments used to treat severe Parkinson’s disease are deep brain stimulation (DBS) and the Duodopa pump (DP). DBS requires an invasive neurosurgical intervention that involves the insertion of electrodes deep in the brain, which are connected to a pulse generator placed in the chest region. The device generates electrical pulses that stimulate a certain area of the brain. Therefore, this procedure works similarly to a pacemaker but for the brain. DP consists in a continuous intrajejunal infusion of levodopa‐carbidopa intestinal gel. The gel is in a plastic cassette linked to a pump, which is connected to a tube inserted to the intestine through a small cut in the gut wall.
This qualitative study aims to collect and analyse a wide range of experiences of PD patients treated with DBS or DP and their family caregivers’ to better understand how they experience life with PD and their perception about novel device-aided treatments. To this aim, the study intends to identify the impact of PD and DBS or DP on the patients’ and their family caregivers’ personal and social lives, and to better understand how they cope with PD symptoms and device- aid treatments.
We decided to enrich the collection of experiences with PD by adding a focus on two novel therapies for two fundamental reasons:
We will conduct this study in collaboration with the Department of Neurology of the University Hospital Zurich and the Kantonspital St Gallen. We will also aim to engage other institutions, such as the Centre Hospitalier Universitaire Vaudois of Lausanne and the Inselspital of Bern, or patients’ associations.