Informal 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. This study aimed to identify the unmet needs of current carers, and to examine the interest, willingness and requirements of both current and former carers for peer-to-peer support. Data were collected from August 2020 to February 2021 through questionnaires examining (1) resources and needs for support; (2) topics for support and advice; and (3) preferences for peer-to-peer initiatives. Open questions were analyzed thematically, after open coding. In total, 141 current and 15 former informal carers participated. Current carers were mainly women (68%) and partner of a person with PD (86%). Former carers were mainly women (80%) who had cared for a partner or parent (53%; 47%) with PD. Almost half of the current carers expressed need for additional support in finding balance, changing relationships, and learning how to cope with lack of emotions and motivation. Half of the carers were positive about the opportunity to exchange experiences and knowledge with former carers. Willingness among former carers for providing peer-to-peer support was high (87%). In both groups, having a degree of commonality with peers was considered an essential requirement. These findings provide guidance for developing peer-to-peer support programs, incorporating former carers.

Background 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. Such insights would shift from “one size fits all” healthcare resource allocation to personalized medicine. Objective We systematically examined the effectiveness of case management interventions on two common complications associated PD and other chronic health conditions: Depressive symptoms and symptoms of anxiety. Methods We identified studies published until November 2022 from PubMed and Embase databases using predefined inclusion criteria. For each study, data were extracted independently by two researchers. First, descriptive and qualitative analyses of all included studies were performed, followed by random-effects meta-analyses to assess the impact of case management interventions on anxiety and depressive symptoms. Second, meta-regression was performed to analyze potential modifying effects of demographic characteristics, disease characteristics and case management components. Results 23 randomized controlled trials and four non-randomized studies reported data on the effect of case management on symptoms of anxiety (8 studies) or depressive symptoms (26 studies). Across meta-analyses, we observed a statistically significant effect of case management on reducing symptoms of anxiety (Standardized Mean Difference [SMD] = - 0.47; 95% confidence interval [CI]: -0.69, -0.32) and depressive symptoms (SMD = - 0.48; CI: -0.71, -0.25). We found large heterogeneity in effect estimates across studies, but this was not explained by patient population or intervention characteristics. Conclusions Among people with chronic health conditions, case management has beneficial effects on symptoms of depressive symptoms and symptoms of anxiety. Currently, research on case management interventions are rare. Future studies should assess the utility of case management for potentially preventative and common complications, focusing on the optimal content, frequency, and intensity of case management.

Little 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. Coping was measured using the Ways of Coping Questionnaire (WCQ) and QoL was measured using the Parkinson’s Disease Questionnaire (PDQ-39). 977 out of 988 participants completed the questionnaires and 935 participants were diagnosed with PD. Factor analysis was undertaken to test if ways of coping were similar or different to previous findings in a PD population. We used linear regression analyses to examine predictors of coping styles. We then used multivariable linear regression to test how coping style was associated with the domains of QoL conditional on potential confounders. The five coping styles identified by the factor analysis were: “taking action and emphasizing the positive”, “distancing and fantasizing”, “goal oriented and planful problem solving”, “seeking social support” and “avoidance and acceptance”. Age, gender, education and anxiety were associated with the type of coping strategy. For example, higher education was associated with more active coping strategies (e.g. β = 4.39, p < 0.001 for goal oriented). Conditional on other confounders, most coping strategies had little effect on QoL domains. These findings demonstrate that coping behavior of people with PD is influenced by psychological status and personal traits. However, there was only a modest effect of coping behavior on QoL. Future research needs to test whether the enhancement or discouragement of certain coping strategies is feasible and can enhance QoL.