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:
1) 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.
2) 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.
DIPEx, Parkinson’s disease, deep brain stimulation, Duodopa pump, psychosocial effects, personality, identity, narratives.
We will conduct this study in collaboration with the Department of Neurology of the Zurich Unispital 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.
2017 - 2020
This study applies a narrative approach by means of mixed qualitative methods (semi-structured interviews and collection and interpretation of patients’ drawings). Participants will be asked to draw to further explore their experience with the disease and their perception of the treatment. The collection of drawings will provide us with a more complete and less linear insight into complex situations that speech alone cannot always provide.
This study pursues five aims. First, to give patients and family caregivers a voice to share their experiences with PD and the treatment. Second, to analyse patients’ and family caregivers’ experiences with PD and DBS and DP. Third, to further explore patients’ and family caregivers’ actual concerns regarding the disease and the treatment. Fourth, to compare the experiences with both treatments. Fifth, to draw a comparison between the data emerging from the existing literature with the personal experiences of patients and family caregivers.
1) How do patients and family caregivers experience PD? What is the impact of PD on patients’ and family caregivers’ lives and their social relationships? What is the perception of their family caregivers? What are the main difficulties that patients and family caregivers face with PD?
2) How do patients experience the treatment? What is their relationship with the neurostimulator or the pump as devices? What is the impact of the treatment on their daily lives? What is the perception of their family caregivers? What are the main difficulties of patients and their family caregivers’ during the treatment and what are their real concerns? What were their expectations from the therapy? How was the decision-making process?
3) What are the similarities and differences perceived by the patients and their family caregivers if we compare DBS and DP?
Learning about patients’ narratives by means of qualitative research can be helpful in a variety of ways:
1) Filling a research gap. As it was mentioned before, there is no research about the psychosocial effects of DP and most research in the field of DBS employs quantitative methods. We consider necessary the conduction of qualitative studies to assess the psychosocial effects of DBS and DP. While quantitative research tends to analyze phenomena in terms of trends and frequencies, qualitative research seeks to determine the meaning of a phenomenon through description. Therefore, a qualitative approach allows elucidation of issues that matter to patients but would not otherwise be covered by quantitative methods.
2) Bringing a new approach to the state of research. This study will be the first comparing the qualitative perceptions of patients and family caregivers about DBS and DP. From a clinical perspective this information is relevant to be able to advise patients in the best possible way and deciding about treatment options.
3) Self-help and patient engagement. The dissemination of personal experiences with Parkinson’s disease with a focus on novel therapies can also contribute to empowering patients and family caregivers and making things easier for others when facing similar decisions or situations. Therefore, reading and hearing others’ accounts of their own experiences of health and illness can positively impact people’s lives.
4) Improving the quality of healthcare. The approach of this study could help health professionals to better know what matters to PD patients in their daily life and which difficulties they face while adapting to DBS or AP, which could further improve healthcare.
5) The inclusion of family caregivers. We believe that involving both patients and family caregivers will help us to better assess the impact of both treatments on the patients’ personal and social lives. As patients’ relatives are sometimes more sensitive to changes in the patients’ lives than patients themselves, their experiences are of great value to better understand those patients’ narratives. Second, family caregivers’ narratives are worth exploring due to the impact that the disease of their loved ones has on their lives.