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

KEHAGIA, Angie A, CHOWIENCZYK, Sarah, HELENA VAN VELTHOVEN, Michelle, KING, Emma, NORTH, Tracie, SHENTON, Deb, ABRAHAM, Jane, LANGLEY, Joe, PARTRIDGE, Rebecca, ANKENY, Ursula, GORST, Terry, EDWARDS, Emma, WHIPPS, Sue, BATUP, Martha, RIDEOUT, Jane, SWABEY, Mat, INCHES, Jemma, BENTLEY, Sue, GILBERT, Georgina and CARROLL, Camille (2024). Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson's Disease Care Pathway: A Healthcare Improvement Initiative. Journal of Parkinson's disease, 14 (1), 197-208.

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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.

Item Type: Article
Uncontrolled Keywords: Humans; Parkinson Disease; Feasibility Studies; Quality of Life; Critical Pathways; Delivery of Health Care; Self-Management; Parkinson’s disease; Self-management; digital health technology; remote management; sensor; Humans; Parkinson Disease; Critical Pathways; Self-Management; Quality of Life; Feasibility Studies; Delivery of Health Care; 0601 Biochemistry and Cell Biology; 1109 Neurosciences; 3209 Neurosciences
Identification Number:
Page Range: 197-208
SWORD Depositor: Symplectic Elements
Depositing User: Symplectic Elements
Date Deposited: 21 Feb 2024 13:51
Last Modified: 22 Feb 2024 14:15

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