Evaluation of the Impact of Integrated Care and Self-Management After Deep Brain Stimulation in Parkinson's Disease.

BACKGROUND: Parkinson's disease (PD) is a progressive neurodegenerative disorder with a myriad of motor and non-motor symptoms. Although deep brain stimulation (DBS) has a dramatic impact in the lives of people with PD, care delivery remains complex. There is a lack of evidence on the implementation and role of integrated care and self-management support in people with PD with chronic DBS. OBJECTIVE: To evaluate care needs, implementation and impact of a pragmatic network for PD care, the Integrated Parkinson Care Network (IPCN). METHODS: This is a subgroup analyses of a 6-month, pre-post design, single-centre, phase 2 study to assess a patient-centred care model based on integrated care, self-management support (IPCN) in PD, focusing on those participants with chronic DBS. RESULTS: We included 22 people with PD and chronic DBS (median time since DBS - 30 months). The mean age was 63.9 (7.6) years and mean disease duration was 15.2 (6.9) years. The top three care priorities were speech (54.5%), mobility (40.9%) and mood (31.8%). After the IPCN program, there was a positive change in the perception of support for chronic care (Patient Assessment of Chronic Illness Case: 0.85; 95% CI: 1.2 to -0.4) and self-management (5As: 0.77; 95% CI: 0.39 -1.15), along with quality of life (PDQ8 : 7.1, 95% CI:1.8 -12.4). CONCLUSION: The IPCN is a care delivery model that addresses specific care needs of people with PD and chronic DBS. The current study showed its feasibility and warrants further evaluation.

Moving towards Integrated and Personalized Care in Parkinson's Disease: A Framework Proposal for Training Parkinson Nurses.

Delivering healthcare to people living with Parkinson's disease (PD) may be challenging in face of differentiated care needs during a PD journey and a growing complexity. In this regard, integrative care models may foster flexible solutions on patients' care needs whereas Parkinson Nurses (PN) may be pivotal facilitators. However, at present hardly any training opportunities tailored to the care priorities of PD-patients are to be found for nurses. Following a conceptual approach, this article aims at setting a framework for training PN by reviewing existing literature on care priorities for PD. As a result, six prerequisites were formulated concerning a framework for training PN. The proposed training framework consist of three modules covering topics of PD: (i) comprehensive care, (ii) self-management support and (iii) health coaching. A fourth module on telemedicine may be added if applicable. The framework streamlines important theoretical concepts of professional PD management and may enable the development of novel, personalized care approaches.

Pilot Evaluation of a Pragmatic Network for Integrated Care and Self-Management in Parkinson's Disease.

BACKGROUND: Parkinson's disease (PD) is a chronic neurodegenerative disorder that challenges care provision. A multidisciplinary care model needs to be impactful, feasible, and viable economically for widespread utilization. Supportive evidence is lacking. OBJECTIVE: The objective of this study was to evaluate the implementation and impact of a pragmatic network for PD care, the Integrated Parkinson Care Network (IPCN). METHODS: A 6-month, pre-post design, single-center, phase 2 study for complex interventions for patients with newly diagnosed (<1 year) and advanced (diagnosis >8 years) PD was used to assess a patient-centered care model based on integrated care, self-management support, and technology-enabled care. We comprehensively assessed the implementation of care paths, change in selected health and care quality outcomes after the Integrated Parkinson Care Network program, and costs analyses. RESULTS: We recruited 100 participants in 6 months. Overall, the top care priorities were speech and communication (33.7%), anxiety and depression (31.6%), and mobility, balance, and falls (29.6%), and the most commonly (>45%) used resources were speech-language pathology, community seniors services, and physiotherapy. Care priorities were met successfully in 90.6% of the cases, and there was a positive change in the Parkinson's Disease Questionnaire-8 (2.7; 95% confidence interval, 0.4-5.0; statistically significant in the advanced group), the perception of support for chronic care (Patient Assessment of Chronic Illness Case score, 1.1; 95% confidence interval, 0.9-1.4), and self-management (5As score, 1.2; 95% confidence interval, 1.0-1.4). The total cost of the Integrated Parkinson Care Network was C$1367 per patient. CONCLUSIONS: A pragmatic development of a care delivery network based on integrated care and self-management support is promising for its feasibility, impact, and a sustainable cost. © 2020 International Parkinson and Movement Disorder Society.

The Integrated Parkinson's disease Care Network (IPCN): Qualitative evaluation of a new approach to care for Parkinson's disease.

OBJECTIVES: To evaluate the acceptability of the Integrated Parkinson's disease Care Network (IPCN) from the perspectives of persons with Parkinson's disease (PD), their care partners and healthcare providers, including identification of important components and areas for improvement. METHODS: We used a descriptive qualitative approach with interviews (n = 15) and focus groups (n = 31) with persons with PD who were newly diagnosed and those with advanced PD, care partners and healthcare providers. Questions were designed to gather feedback on each component of the IPCN. RESULTS: Four overarching categories emerged: CCI support, New knowledge, Goal identification and achievement, and Readiness for self-management. These represent important aspects of participants' experiences of the IPCN. CONCLUSION: Most participants experienced the IPCN as helpful for managing living with PD and accessing resources. The relationship with the CCI was a critical component; the CCI was perceived to be knowledgeable, accessible, and responsive. PRACTICE IMPLICATIONS: The IPCN is a model to promote coordinated care and self-management. This study supports the key components of the IPCN as important for supporting patients in managing their lives with PD. Incorporation of other strategies to support self-management may enhance the model. Availability of and access to community resources was identified as an ongoing challenge.