Co-design, feasibility, and acceptability of a digital intervention promoting physical activity in people newly diagnosed with Parkinson’s disease

Background Physical activity is recognised as a fundamental component of Parkinson's disease (PD) management, with evidence highlighting its preventative, symptomatic, and potentially disease-modifying benefits. Engagement in physical activity from diagnosis is crucial for effective PD management, improving long-term health outcomes and quality of life for people with Parkinson’s disease (PwP). However, there is no standardised approach to promoting physical activity, potentially affecting access to interventions that support symptom management alongside pharmacological treatments. This thesis aims to co-design and assess the feasibility and acceptability of an intervention that promotes physical activity in people who have been diagnosed with PD for less than a year. Methods The co-design of the intervention was informed by a systematic literature review and a mixed-method study which comprised surveys with 403 PwP and 189 healthcare professionals (HCPs), and 17 interviews with PwP. Using an experience-based co-design approach, three focus group discussions with PwP and HCPs were utilised to co-design the intervention. A pilot randomised controlled trial was conducted in Cambridge University Hospitals Foundation Trust and Cambridgeshire and Peterborough Foundation Trust to assess the intervention's feasibility and acceptability in 30 PwP. Results The systematic review found a limited number of interventions (only six studies) that promote physical activity in PwP. These interventions included various strategies such as educational methods, coaching, goal setting, and exercise classes. However, the design of most studies did not allow for the assessment of the individual impact of each strategy, as they were collectively evaluated. This impeded a clear understanding of how each specific strategy contributed to the overall effectiveness of the interventions. Most interventions were delivered to people living with PD for over five years on average, with only two interventions targeting people in the early stages of PD. Moreover, there was limited reporting of involvement of PwP in content development of the intervention, which often followed a “one-size-fits-all” approach. The mixed-method study revealed limited access to physical activity interventions, with 64% of PwP reporting not receiving an educational or exercise intervention. Eighty-three percent of those participants reported that these interventions were not offered to them at diagnosis. Physical activity interventions and referrals to physiotherapy were reactive, with 17 of 29 physicians referring PwP to physiotherapy only when mobility declined, or falls occurred. This lack of early intervention negatively affected PwP's emotional well-being and participation in symptom management activities, especially for those unable to access private services. PwP emphasised the need for evidence-based, positive, individualised, and timely interventions. Having access to information on how to manage symptoms before mobility decline was seen as empowering and hopeful. Three focus group discussions with PwP and HCPs were conducted to co-design a digital intervention which aims to improve understanding of the role of physical activity and exercise in PD management. The Knowledge, Exercise-Efficacy, and Participation (KEEP) intervention comprises six online self-directed modules, and four group discussions facilitated by a specialist physiotherapist. A pilot randomised controlled trial across two NHS trusts demonstrated the feasibility and acceptability of the KEEP intervention, with high recruitment (64%) and retention rates (97%). Ninety-two percent of participants self-reported changes in their daily activities post-participation in the trial. Discussion This thesis contributes to bridging the gap in PD literature by addressing the unmet needs of PwP, through a collaborative approach. It provides evidence of the feasibility and acceptability of the KEEP intervention, offering a solid proof of concept in intervention design. Future steps include refining the intervention and evaluating its effectiveness within the PD pathway. The goal is to optimise the intervention's impact and integrate it into clinical practice, thereby benefiting people living with PD.

Name dc:type.qualificationname

Doctor of Philosophy (PhD)

Level dc:type.qualificationlevel

Doctoral

Grantor dc:publisher.institution

University of Cambridge

Year dc:date.issued

2024

Author dc:creator

• Agley, Ledia

Advisor dc:contributor.advisor

• Lafortune, Louise

• Digital intervention, Parkinson's disease, co-design, physical activity, promotion

Licence

• https://apollo8-f-pro.lib.cam.ac.uk/bitstreams/e57902cc-4a5b-4d03-ab73-df8e929d7893/download
• https://creativecommons.org/licenses/by-nc/4.0/

Language dc:language

eng

DOI dc:identifier.doi

https://doi.org/10.17863/CAM.113805

OAI identifier oai:identifier

oai:www.repository.cam.ac.uk:1810/376664