Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson’s Disease Care Pathway: A Healthcare Improvement Initiative

Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson’s Disease Care Pathway: A Healthcare Improvement Initiative

Background: There is significant unmet need for effective and efficiently delivered care for people with Parkinson’s disease (PwP). We undertook a service improvement initiative to co-develop and implement a new care pathway, Home Based Care (HBC), based on supported self-management, remote monitori...

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Bibliographic Details
Published in:Journal of Parkinson's disease Vol. 14; no. 1; pp. 197 - 208
Main Authors: Kehagia, Angie A., Chowienczyk, Sarah, Helena van Velthoven, Michelle, King, Emma, North, Tracie, Shenton, Deb, Abraham, Jane, Langley, Joseph, Partridge, Rebecca, Ankeny, Ursula, Gorst, Terry, Edwards, Emma, Whipps, Sue, Batup, Martha, Rideout, Jane, Swabey, Mat, Inches, Jemma, Bentley, Sue, Gilbert, Georgina, Carroll, Camille
Format: Journal Article
Language:English
Published: London, England SAGE Publications 23-01-2024
IOS Press BV
Subjects:
Critical Pathways
Delivery of Health Care
Feasibility Studies
Health care
Humans
Movement disorders
Neurodegenerative diseases
Parkinson Disease - therapy
Parkinson's disease
Quality of Life
Questionnaires
Safety
Self-Management
Self-management
digital health technology
sensor
Parkinson’s disease
remote management
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Summary:Background: There is significant unmet need for effective and efficiently delivered care for people with Parkinson’s disease (PwP). We undertook a service improvement initiative to co-develop and implement a new care pathway, Home Based Care (HBC), based on supported self-management, remote monitoring and the ability to trigger a healthcare contact when needed. Objective: To evaluate feasibility, acceptability and safety of Home Based Care. Methods: We evaluated data from the first 100 patients on HBC for 6 months. Patient monitoring, performed at baseline and 6-monthly, comprised motor (MDS-UPDRS II and accelerometer), non-motor (NMSQ, PDSS-2, HADS) and quality of life (PDQ) measures. Care quality was audited against Parkinson’s UK national audit standards. Process measures captured feasibility. Acceptability was assessed using a mixed-methods approach comprising questionnaires and semi-structured interviews. Results: Between October 2019 and January 2021, 108 PwP were enrolled onto HBC, with data from 100 being available at 6 months. Over 90% of all questionnaires were returned, 97% were complete or had < 3 missing items. Reporting and communications occurred within agreed timeframes. Compared with baseline, after 6m on HBC, PD symptoms were stable; more PwP felt listened to (90% vs. 79%) and able to seek help (79% vs. 68%). HBC met 93% of national audit criteria. Key themes from the interviews included autonomy and empowerment. Conclusions: We have demonstrated acceptability, feasibility and safety of our novel remotely delivered Parkinson’s care pathway. Ensuring scalability will widen its reach and realize its benefits for underserved communities, enabling formal comparisons with standard care and cost-effectiveness evaluation.
ISSN:1877-7171
1877-718X
DOI:10.3233/JPD-230205