ABSTRACT
Due to the heterogeneous clinical presentation, people with Parkinsonism (PwP) develop individual healthcare needs as their disease progresses. However, because of limited health resources during the COVID-19 pandemic, many patients were put at risk of inadequate care. All this occurred in the context of inequitable healthcare provision within societies, especially for such vulnerable populations. This study aimed to investigate factors influencing satisfaction and unmet need for healthcare among PwP during the COVID-19 pandemic in Germany. Analyses relied on an anonymous online survey with a 49-item questionnaire. We aimed at describing access to health services before and during the early stages of the pandemic. To this end, a generalized linear model was used to derive significant predictors and a stepwise regression to subsummarize the main factors of perceived inadequate care. In total, 551 questionnaires showed that satisfaction with Parkinsonism-related care decreased significantly during the pandemic (p < 0.001). In particular, factors such as lower educational level, lower perceived expertise of healthcare providers, less confidence in remote care, difficulties in obtaining healthcare, and restricted access to care before the pandemic but also lower densities of neurologists at residence and less ability to overcome barriers were indicative of higher odds to perceive unmet needs (p < 0.05). The results unveil obstacles contributing to reduced access to healthcare during the COVID-19 pandemic for PwP. These findings enable considerations for improved provision of healthcare services to PwP.
ABSTRACT
Research on support for relatives of patients with Parkinsonism has mainly focused on caregivers, while preventive offers for non-caregiving relatives are lacking. Thus, the aim of this multicenter pilot study is to develop and assess the feasibility of a preventive psychosocial support program for relatives of patients with Parkinsonism. It specifically focuses on family members of patients who are in an early phase of the disease, are not currently caregiving, and have not yet developed distress symptoms. It includes a telemedicine-based, 6-week preventive psychological short intervention (PPSI). The main objective of this feasibility mixed-methods study is to specify the demand for an early, low-threshold, and low-cost short intervention and to collect feedback based on qualitative and quantitative data of N = 20 relatives. Secondary objectives are an evaluation of the effects of the intervention and an analysis of the study design. Future directions are to further develop the PPSI using these data. This study can serve as a basis for future randomized controlled studies on this intervention, which might fill an important gap in clinical supply.