Unveiling the invisible: a qualitative interview study on the impact of young onset Parkinson's disease on (ex-partners).

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. MATERIALS AND METHODS: We used a qualitative approach including semi-structured interviews with 16 (ex-)partners of people with YOPD. Interviews were audio-taped and transcribed verbatim. Qualitative thematic analysis was used to analyze the interview data. RESULTS: Qualitative analysis revealed nine themes to describe the impact of having an (ex-)partner with YOPD: (1) Psychosocial impact, (2) Impact on taking care of children, (3) Impact on working life, (4) Impact on intimacy and (sexual) relationships, (5) Impact on daily life, (6) Acceptance and other coping strategies, (7) Thoughts about the future, (8) Autonomy and (9) Caregiver support. DISCUSSION: This study provides important findings that will inform future interventions that aim to reduce or even prevent caregiver burden, as well as to inform healthcare professionals to recognize the needs of caregivers of people with YOPD.

Assessing the validity of a Parkinson's care evaluation: the PRIME-NL study.

INTRODUCTION: 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). Second, we compared our questionnaire sample to the source population to determine generalizability. Third, we investigated sources of bias by comparing the PRIME and UC questionnaire sample on baseline characteristics and 1-year compliance. RESULTS: Baseline characteristics were similar in the PRIME (n = 1430) and UC (n = 26,250) source populations. The combined questionnaire sample (n = 920) was somewhat younger and had a slightly longer disease duration than the combined source population. Compared to the questionnaire sample in the PRIME region, the UC questionnaire sample was slightly younger, had better cognition, had a longer disease duration, had a higher educational attainment and consumed more alcohol. 1-year compliance of the questionnaire sample was higher in the UC region (96%) than in the PRIME region (92%). CONCLUSION: The generalizability of the PRIME-NL study seems to be good, yet we found evidence of some selection bias. This selection bias necessitates the use of advanced statistical methods for the final evaluation of PRIME-NL, such as inverse probability weighting or propensity score matching. The PRIME-NL study provides a unique window into the validity of a large-scale care evaluation for people with a chronic disease, in this case parkinsonism.

Caregiver burden in Parkinson's disease: a mixed-methods study.

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. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Determinants of coping styles of people with Parkinson's Disease.

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. ß = 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.

Case management interventions in chronic disease reduce anxiety and depressive symptoms: A systematic review and meta-analysis.

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.

Using former carers' expertise in peer support for carers of people with Parkinson's Disease.

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.