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Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease

  • Dorothy KesslerEmail author
  • Jennifer Hauteclocque
  • David Grimes
  • Tiago Mestre
  • Diane Côtéd
  • Clare Liddy
Article

Abstract

Background

Parkinson’s disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input.

Methods

This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure®). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman’s rank-order correlation. Interviews were analyzed using conventional content analysis.

Results

Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants’ perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services.

Conclusions

This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.

Keywords

Parkinson’s disease Self-management Collaborative care Co-design 

Notes

Acknowledgements

This work was supported by the University of Ottawa Brain and Mind Research Institute.

Compliance with ethical standards

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.School of Rehabilitation TherapyQueen’s UniversityKingstonCanada
  2. 2.C.T. Lamont Primary Health Care Research CentreBruyère Research InstituteOttawaCanada
  3. 3.Ottawa Hospital Research InstituteOttawaCanada
  4. 4.The University of Ottawa Brain and Mind Research InstituteUniversity of OttawaOttawaCanada
  5. 5.Department of Family MedicineUniversity of OttawaOttawaCanada

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