Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or public contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.This work was supported by the EU Joint Programme-Neurodegenerative Disease Research (JPND). In Norway, the work was funded by the Research Council of Norway (grant number: 299762) and the DAM Foundation (project number FO296567). In Denmark, the work was funded by the Innovation Fund Denmark. In the United Kingdom, the work was funded by the Alzheimer's Society (grant number: 470). The Autonomous Universityof Madrid and the Ministry of Universities of the Spanish Government (Recovery, Transformation and Resilience Plan) were the financing entities of the researcher M. V. Navarta‐Sánchez (Grant number: CA2/RSUE/2021‐00854)S

The General Health Questionnaire-28 (GHQ-28) as an outcome measurement in a randomized controlled trial in a Norwegian stroke population

Background Several studies have documented the variety of post-stroke psychosocial challenges, which are complex, multifaceted, and affect a patient’s rehabilitation and recovery. Due to the consequences of these challenges, psychosocial well-being should be considered an important outcome of the stroke rehabilitation. Thus, a valid and reliable instrument that is appropriate for the stroke population is required. The factor structure of the Norwegian version of GHQ-28 has not previously been examined when applied to a stroke population. The purpose of this study was to explore the psychometric properties of the GHQ-28 when applied in the stroke population included in the randomized controlled trial; “Psychosocial well-being following stroke”, by evaluating the internal consistency, exploring the factor structure, construct validity and measurement invariance. Methods Data were obtained from 322 individuals with a stroke onset within the past month. The Kaiser-Meyer-Olkin (KMO) test was used to test the sampling adequacy for exploratory factor analysis, and the Bartlett’s test of sphericity was used to test equal variances. Internal consistency was analysed using Cronbach’s alpha. The factor structure of the GHQ-28 was evaluated by exploratory factor analysis (EFA), and a confirmatory factor analysis (CFA) was used to determine the goodness of fit to the original structure of the outcome measurement. Measurement invariance for two time points was evaluated by configural, metric and scalar invariance. Results The results from the EFA supported the four-factor dimensionality, but some of the items were loaded on different factors compared to those of the original structure. The differences resulted in a reduced goodness of fit in the CFA. Measurement invariance at two time points was confirmed. Conclusions The change in mean score from one to six months on the GHQ-28 and the factor composition are assumed to be affected by characteristics in the stroke population. The results, when applying the GHQ-28 in a stroke population, and sub-factor analysis based on the original factor structure should be interpreted with caution. Trial registration ClinicalTrials.gov, NCT02338869 , registered 10/04/2014

Understanding support systems for Parkinson's disease management in community settings: a cross‐national qualitative study

Background: health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease.Objective: this study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships.Methods: a mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings.Results: a total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services.Conclusions: policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory.Patient or Public ContributionPatient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings