Background: Parkinson's disease (PD) is a progressive neurodegenerative disorder with a myriad of motor and non-motor symptoms. Although deep brain stimulation (DBS) has a dramatic impact in the lives of people with PD, care delivery remains complex. There is a lack of evidence on the implementation and role of integrated care and self-management support in people with PD with chronic DBS.
Objective: To evaluate care needs, implementation and impact of a pragmatic network for PD care, the Integrated Parkinson Care Network (IPCN).
Methods: This is a subgroup analyses of a 6-month, pre-post design, single-centre, phase 2 study to assess a patient-centred care model based on integrated care, self-management support (IPCN) in PD, focusing on those participants with chronic DBS.
Results: We included 22 people with PD and chronic DBS (median time since DBS - 30 months). The mean age was 63.9 (7.6) years and mean disease duration was 15.2 (6.9) years. The top three care priorities were speech (54.5%), mobility (40.9%) and mood (31.8%). After the IPCN program, there was a positive change in the perception of support for chronic care (Patient Assessment of Chronic Illness Case: 0.85; 95% CI: 1.2 to -0.4) and self-management (5As: 0.77; 95% CI: 0.39 -1.15), along with quality of life (PDQ8 : 7.1, 95% CI:1.8 -12.4).
Conclusion: The IPCN is a care delivery model that addresses specific care needs of people with PD and chronic DBS. The current study showed its feasibility and warrants further evaluation.
Keywords: Parkinson’s disease; care; deep brain stimulation; quality of life.