Date: Sunday, October 7, 2018
Session Title: Quality Of Life/Caregiver Burden in Movement Disorders
Session Time: 1:45pm-3:15pm
Location: Hall 3FG
Objective: To conduct a preliminary evaluation of the IPCN for: 1) proof of concept, 2) processes refinement for its evaluation, and 3) assess the feasibility and inform the design of a large-scale randomized trial.
Background: The multiple needs of patients with Parkinson’s disease (PD) are a challenge to healthcare systems and the burden of care will worsen with the expected increase in its incidence. More commonly, there is poorly coordinated access to community resources, which places a significant strain on patients and caregivers. Multispecialty care is an attractive care delivery model, but past designs failed to be fully effective or sustainable.
Methods: Intervention: IPCN, a pragmatic patient-centred care model based on Integrated Care, Self-management Support, Digital Health Technology. Study design: 6-month single-centre Phase 2 study for complex interventions. Population: “newly diagnosed PD” – clinically probable diagnosis (MDS criteria) < 1 year; “Advanced PD” - PD clinical diagnosis>8 years or H&Y ≥ 3 (OFF state). Assessments and data analyses plan: A) Clinical assessments at baseline, 3 and 6 months (PDQ-8, EQ-5D, MDS-UPDRS part I, II, III, Geriatric Depression Scale, CGI-C, Assessment of Chronic Illness Care+, Zarit Caregiver Burden Questionnaire) to identify the most appropriate outcome measures, inform a cost-utility analysis. B) Evaluation of the IPCN implementation and study enrollment, C) Qualitative evaluation of acceptability/ satisfaction of the IPCN. Sample size: “newly diagnosed PD” (n=25), “advanced PD” (n=75).
Results: After 4 months of recruitment, a total of 91 PD patients were considered eligible for the study, and 69 (75.8%) accepted to participate. In terms of recruitment plan, 75% (n=57/75) for the “advanced PD” strata and 48% (n=12/25) for the “newly diagnosed PD” strata has been completed. Average age(SD) is 68(8.7), 68% are males. The most frequent care priorities were Anxiety/Depression (26.9%), Mobility, Balance, Falls (23,1%) and Urinary Problems (19.2%).
Conclusions: The current enrollment rate suggests a high level of acceptability of the concept of the IPCN by eligible PD patients. The recruitment of “newly-diagnosed PD” participants is more challenging. Non-motor and axial motor problems are among the top care priorities. The completion of this preliminary evaluation of the IPCN will inform the feasibility and design of a large-scale assessment of the IPCN model.
To cite this abstract in AMA style:T. Mestre, D. Kessler, D. Coté, K. Thavorn, C. Liddy, M. Taljaard, D. Grimes. Preliminary evaluation of the Integrated Parkinson’s Care Network (IPCN): An integrated care model for complex needs [abstract]. Mov Disord. 2018; 33 (suppl 2). https://www.mdsabstracts.org/abstract/preliminary-evaluation-of-the-integrated-parkinsons-care-network-ipcn-an-integrated-care-model-for-complex-needs/. Accessed November 29, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/preliminary-evaluation-of-the-integrated-parkinsons-care-network-ipcn-an-integrated-care-model-for-complex-needs/