Affiliations: [a] The Ottawa Hospital Research Institute, Ottawa, ON, Canada
| [b] Department of Medicine, Division of Neurology, The Ottawa Hospital, Ottawa, ON, Canada
| [c] Brain and Mind Research Institute, University of Ottawa, Ottawa, ON, Canada
Correspondence to: Tiago A Mestre, MD PhD, The Ottawa Hospital Research Institute, 1053 Carling Ave, Rm C2196, Ottawa, Ontario K1Y 4E9, Canada. Tel.: +1 613798 5555 x 18986; E-mail: [email protected].
Abstract: 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 and chronic DBS. Objective:To evaluate care needs, implementation and impact of a pragmatic network for PD care, the Integrated Parkinson Care Network (IPCN) in people with PD and chronic DBS. 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 in PD (IPCN), 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 Care +: –0.84; 95% CI: –1.2 to –0.5) and self-management (5As: –0.77; 95% CI: –1.1 to –0.4), 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, deep brain stimulation, care, quality of life