Introduction: Living with young onset Parkinson's disease (YOPD) not only affects the persons with YOPD, but also their families. Although caregiver burden has been researched in Parkinson's disease in general, little is known about the specific impact of having an (ex-)partner with YOPD. This exploratory study aimed to explore the impact of having an (ex-)partner with YOPD on daily life.
View Article and Find Full Text PDFIntroduction: The PRIME-NL study prospectively evaluates a new integrated and personalized care model for people with parkinsonism, including Parkinson's disease, in a selected region (PRIME) in the Netherlands. We address the generalizability and sources of selection and confounding bias of the PRIME-NL study by examining baseline and 1-year compliance data.
Methods: First, we assessed regional baseline differences between the PRIME and the usual care (UC) region using healthcare claims data of almost all people with Parkinson's disease in the Netherlands (the source population).
Background: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden.
View Article and Find Full Text PDFLittle is known about how people with Parkinson's disease (PD) cope with stressful life events. We examined the determinants of specific coping strategies and whether specific choices have any impact on quality of life (QoL). We recruited patients with PD who had been seen at a neurology outpatient clinic at least once during the past year as part of the PRIME-NL cohort study.
View Article and Find Full Text PDFBackground: There is no systematic insight into the effect of case management on common complications of chronic diseases, including depressive symptoms and symptoms of anxiety. This is a significant knowledge gap, given that people with a chronic disease such as Parkinson Disease or Alzheimer's Disease have identified care coordination as one of their highest priorities. Furthermore, it remains unclear whether the putative beneficial effects of case management would vary by crucial patient characteristics, such as their age, gender, or disease characteristics.
View Article and Find Full Text PDFInformal carers gain unique experience and knowledge when caring for a loved person. However, this knowledge often remains unused after their loved one with Parkinson's disease (PD) has passed away. Hence, two opportunities are currently being missed: sharing this unique experience could support current informal carers and offer the bereaved former carers the option to continue to fulfil a meaningful role.
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