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:
- Chronic treatment is an essential element for PD as an incurable disease. DBS and DP are an alternative when oral medication does no longer when oral therapies stop working properly or their side effects are not bearable anymore. Nevertheless, there is a research gap regarding DBS and DP treatments. On the one hand, there is a lot of technical information about DBS, but there is very little data about personal experiences with this treatment. On the other hand, there is little literature about DP and no research about their psychosocial effects. Therefore, we consider it very important both from a clinical and from an ethics point of view to conduct qualitative research to gain a better understanding of how patients and family caregivers perceive these treatments.
- Both DBS and DP require the implantation of a device in the patient's body, but the implantation place is different. DBS is placed in the brain and AP in the intestine. As DBS requires invasive surgery and DP seems to be a less invasive treatment, we consider relevant to explore the patients’ and family caregivers’ perception about this issue and their relationship with these devices. Our objective is to better understand what the impact of these treatments on patients’ and family caregivers’ daily life is, and to identify their needs and fears about the treatment, as well as the most common difficulties that both patients and caregivers face with PD and DBS or DP. We firmly believe that such information could be highly relevant for advising and deciding about treatment options.
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.