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.
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Data availability
The datasets generated and analyzed during the current study are available from the corresponding author on reasonable request.
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This work was supported by the University of Ottawa Brain and Mind Research Institute.
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Kessler, D., Hauteclocque, J., Grimes, D. et al. Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease. Qual Life Res 28, 1355–1364 (2019). https://doi.org/10.1007/s11136-018-2092-0
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DOI: https://doi.org/10.1007/s11136-018-2092-0