Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease
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.
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.
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.
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.
KeywordsParkinson’s disease Self-management Collaborative care Co-design
This work was supported by the University of Ottawa Brain and Mind Research Institute.
Compliance with ethical standards
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 was obtained from all individual participants included in the study.
- 11.Corrigan, J. M., & Adams, K., (Eds.), (2003). Priority areas for national action: Transforming health care quality. Washington D.C.: National Academies Press.Google Scholar
- 22.Rick, J., Rowe, K., Hann, M., Sibbald, B., Reeves, D., Roland, M., et al. (2012). Psychometric properties of the patient assessment of chronic illness care measure: Acceptability, reliability and validity in United Kingdom patients with long-term conditions. BMC Health Service Research, 12, 293.CrossRefGoogle Scholar
- 23.Fowles, J. B., Terry, P., Xi, M., Hibbard, J., Bloom, C. T., & Harvey, L. (2009). Measuring self-management of patients’ and employees’ health: Further validation of the Patient Activation Measure (PAM) based on its relation to employee characteristics. Patient Education and Counseling, 77(1), 116–122.CrossRefGoogle Scholar
- 24.Shortell, S. M., Poon, B. Y., Ramsay, P. P., Rodriguez, H. P., Ivey, S. L., Huber, T., et al. (2017). A multilevel analysis of patient engagement and patient-reported outcomes in primary care practices of accountable care organizations. Journal of General Internal Medicine, 32(6), 640–647.CrossRefGoogle Scholar
- 26.IBM, SPSS Statistics v.24, (2016).Google Scholar
- 28.NVivo qualitative data analysis Software. Version 11. QSR International Pty Ltd. 2015.Google Scholar
- 31.National Institue for Helath and Care Excellence. Parkinson’s disease in adults. NICE guideline [NG71]. (2017). Available at: https://www.nice.org.uk/guidance/NG71. Accessed December 18, 2017.