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

Dorothy Kessler; Stacey Hatch; Libby Alexander; David Grimes; Diane Côté; Clare Liddy; Tiago Mestre

doi:10.1016/j.pec.2020.07.002

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

Patient Educ Couns. 2021 Jan;104(1):136-142. doi: 10.1016/j.pec.2020.07.002. Epub 2020 Jul 8.

Authors

Dorothy Kessler¹, Stacey Hatch², Libby Alexander², David Grimes³, Diane Côté⁴, Clare Liddy⁵, Tiago Mestre³

Affiliations

¹ School of Rehabilitation Therapy, 31 George Street, Queen's University, Kingston, Ontario, K7L 3N6, Canada; C.T. Lamont Primary Health Care Research Centre, Bruyère Research Institute, 43 Bruyère Street, Annex E, Ottawa, ON, K1N 5C8, Canada. Electronic address: dk75@queensu.ca.
² School of Rehabilitation Therapy, 31 George Street, Queen's University, Kingston, Ontario, K7L 3N6, Canada.
³ Ottawa Hospital Research Institute, 501 Smyth Box 511, Ottawa, ON, K1H 8L6, Canada; University of Ottawa Brain and Mind Research Institute, Faculty of Medicine, University of Ottawa, Roger Guindon Hall, 451 Smyth Road, Ottawa, ON, K1J 8M5, Canada.
⁴ Ottawa Hospital Research Institute, 501 Smyth Box 511, Ottawa, ON, K1H 8L6, Canada.
⁵ Department of Family Medicine, University of Ottawa, 600 Peter Morand Cres. Suite 201, Ottawa, ON, K1G 5Z3, Canada; C.T. Lamont Primary Health Care Research Centre, Bruyère Research Institute, 43 Bruyère Street, Annex E, Ottawa, ON, K1N 5C8, Canada.

PMID: 32660740
DOI: 10.1016/j.pec.2020.07.002

Abstract

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.

Keywords: Parkinson disease; Patient care planning; Self-management.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Focus Groups
Health Personnel
Humans
Parkinson Disease* / therapy
Self-Management*