TY - JOUR
T1 - Real-World Evaluation of the Feasibility, Acceptability and Safety of a Remote, Self-Management Parkinson's Disease Care Pathway
T2 - A Healthcare Improvement Initiative
AU - Kehagia, Angie A.
AU - Chowienczyk, Sarah
AU - Helena Van Velthoven, Michelle
AU - King, Emma
AU - North, Tracie
AU - Shenton, Deb
AU - Abraham, Jane
AU - Langley, Joseph
AU - Partridge, Rebecca
AU - Ankeny, Ursula
AU - Gorst, Terry
AU - Edwards, Emma
AU - Whipps, Sue
AU - Batup, Martha
AU - Rideout, Jane
AU - Swabey, Mat
AU - Inches, Jemma
AU - Bentley, Sue
AU - Gilbert, Georgina
AU - Carroll, Camille
N1 - Publisher Copyright:
© 2024 - The authors. Published by IOS Press.
PY - 2024/1/23
Y1 - 2024/1/23
N2 - 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.
AB - 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.
KW - digital health technology
KW - Parkinson's disease
KW - remote management
KW - Self-management
KW - sensor
UR - http://www.scopus.com/inward/record.url?scp=85183589455&partnerID=8YFLogxK
U2 - 10.3233/JPD-230205
DO - 10.3233/JPD-230205
M3 - Article
C2 - 38250784
AN - SCOPUS:85183589455
SN - 1877-7171
VL - 14
SP - 197
EP - 208
JO - Journal of Parkinson's Disease
JF - Journal of Parkinson's Disease
IS - 1
ER -