Transitions in Parkinson's disease in primary care: Protocol of a longitudinal mixed methods study

Introduction: Parkinson's disease affects many aspects of the lives of patients and their relatives. Patients must adapt continuously to disabilities that necessitate changes in (medical) support, such as domestic adjustments, involvement of (non) professional caregivers or admission to hospital. Such changes mark a transition: a transfer of a patient between levels or locations of care. Transitions are likely to be multifold and complex, given that Parkinson's disease care extends across all echelons of healthcare. Patients and relatives are vulnerable during a transition, which imposes risks for their safety and quality of life. Guidance by the general practitioner, who knows the preferences of the patient, can help to overcome challenges associated with a transition. However, patient-centred primary care requires insight into the transitions patients with Parkinson's disease encounter. We aim to examine these transitions and the way patients, relatives and general practitioners experience them and cope with them. Moreover, we will study the patients' expectations of their general practitioner during a transition and the general practitioners' views on their role. Methods and analysis: A longitudinal mixed methods study will be conducted, using qualitative research methods combined with quantitative data as a validated questionnaire on quality of life. Patients will be asked to make a video diary every 2 weeks for a period of 1 year. Once they encounter a transition, patients and their general practitioners will be interviewed to identify causes and consequences of the transition. The verbatim transcripts of the videos and interviews will be analysed according to the principles of constant comparative analysis. Ethics and dissemination: Ethical approval was not needed according to Dutch legislation. Informed consent of patients, relatives and general practitioners will be obtained. We will disseminate the results in peer-reviewed journals, at research conferences and on the website of the Dutch Parkinson's Disease Association

Time intervals in diagnosing Parkinson's disease: The patients' views

The majority of all patients are content with their pathway to the diagnosis of PD. Objective: To explore patients' views on their pathway to the diagnosis of Parkinson's disease (PD). Methods: A qualitative study of 52 essays written by patients with PD, using comparative content analysis. Results: Patients divide their diagnostic pathway into three time intervals: recognition of the symptoms; the decision to seek help; and the process of diagnosing PD. Patients have difficulties recognizing the prodromal symptoms of PD (their knowledge is based on public figures with advanced PD) and mention their general practitioners do as well. The decision to seek help is influenced by the patient's attitude toward health care and by their significant others. More than half of the patients believe their diagnosis was delayed. However, the majority of all patients are satisfied with their diagnostic trajectory. Conclusion: The pathway to diagnosing PD is an iterative process influenced by patient-, health care provider- and disease-related factors. Despite possible delay in diagnosis, patients are content with their pathway. Practice implications: In order to facilitate earlier diagnosis and timely therapeutic intervention (in particular with regard to future possibilities for disease modifying therapy), effort is required to increase the recognition of prodromal symptoms of PD by patients, their significant others and health care providers

Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands

Objectives: From the perspective of the nursing home (NH) practitioners, to gain understanding of (1) whether challenging behavior in NH residents changed during the COVID-19 measures, (2) whether the practitioners’ involvement in the treatment of challenging behavior changed, (3) what can be learned from the experience of NH staff. Methods: A mixed methods study with a survey in 323 NH practitioners (psychologists, elderly care physicians, nurse practitioners) in the Netherlands, and in-depth interviews in 16 NH practitioners. Nonparametric analyses were used to compare estimated proportions of residents with increased and with decreased challenging behavior. Content analyses were conducted for open-ended questions and in-depth interviews. Results: Participants reported changes in challenging behavior with slightly higher proportions for increased (Q1/Mdn/Q3: 12.5%, 21.7%, 30.8%) than for decreased (8.7%, 14.8%, 27.8%, Z = –2.35, p =.019) challenging behavior. Half of the participants reported that their work load increased and work satisfaction worsened during the measures. Different strategies were described to respond to the effects of COVID-19 measures, such as video calls, providing special areas for residents to meet their loved ones, adjusting activities, and reducing the exposure to negative news. Conclusions: Because COVID-19 measures resulted in both increased and decreased challenging behavior in NH residents, it is important to monitor for their potential long lasting effects. Increased work load and worsened work satisfaction of the NH staff, together with the changes in type of challenging behavior, indicate that the harmful effects of the anti-pandemic measures should be taken seriously