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.