Work Packages and Publications

For work package 1 of the PD-Care programme, focus groups and interviews with people with Parkinson’s, carers and healthcare professionals were conducted and co-creation workshops were held to understand the needs of the various groups.

Before developing the toolkit, systematic reviews of effectiveness and patient perspectives, qualitative research and a rigorous co-design process partnering with key stakeholders were conducted to understand the self-management needs of people with Parkinson's. The aims of this work were to:

1. Systematically review the evidence for self-management in Parkinson’s and similar conditions and other management guidelines for Parkinson’s.
2. Conduct a qualitative study with people with Parkinson’s, their carers, and healthcare professionals exploring their experiences and goals for Parkinson’s care and self-care.

Below are the published papers from this work. 

Self-Management Components as Experienced by People with Parkinson’s Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature (Tuijt et al., 2020)

This systematic review identified six studies focusing on interviews with people with Parkinson's and their carers and how they self-manage their health and well-being.  From these, seven main 'components' were described as useful and should be included in future self-management programmes for people with Parkinson's, targeting their specific needs. 

Link to full paper: Self-Management Components as Experienced by People with Parkinson’s Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review (Nimmons et al., 2020)

This systematic review identified eight effective components to support advanced care planning in parkinsonian disorders. This work was presented at the Society for Academic Primary Care (SAPC) Madingley and internationally at the European Geriatric Medicine Society Congress.

Link to full paper: Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

Health care professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study (Armstrong et al., 2021)

Exploring Healthcare professionals' views of Parkinson's self-management, this systematic review identified four common themes or topics. These were, empowering people with Parkinson's through person-centred care; maximising individuals' motivation, capability and opportunity to self-manage; empowering carers to support the people with Parkinson's and barriers to self-management in people with Parkinson's.

Link to full paper: Health care professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study

People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study (Shah et al., 2022)

Twenty people with Parkinson’s from across London and Hertfordshire, UK took part in semi-structured interviews on self-management. The study aimed to explore the views and experiences of how people living with Parkinson’s self-manage their condition and identify areas that should be incorporated into self-management resources or interventions. Three main themes were identified: (1) Management of physical symptoms, (2) Management of emotional impact,  and (3) barriers to self-management. Holistic and person-centred self-management programmes or interventions should be developed incorporating components such as medication and emotional support, individualised planning of exercise regimes, and accessible, timely and accurate information.

Link to full paper: People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study

Transitions and challenges for people with Parkinson's and their family members: A qualitative study (Read et al., 2022)

This study aimed to explore the experiences of adults with Parkinson’s living at home in the community, and the family members closest to them, which was analysed through the lens of transitions. Semi-structured interviews were used to collect qualitative data from 21 people with Parkinson's and 17 family members. This study identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being.

Link to full paper: Transitions and challenges for people with Parkinson's and their family members: A qualitative study 

The effectiveness of aromatherapy and reflexology in neurodegenerative disorders: a systematic review and meta-analysis (Rawal et al., 2022)

A systematic review and meta-analysis were conducted to investigate the evidence of the effectiveness of aromatherapy and reflexology on all neurodegenerative conditions. We identified nine eligible studies (total sample n = 504 participants) all of which were on multiple sclerosis only. A meta-analysis was conducted including data from six studies, which demonstrated no significant benefit of aromatherapy/reflexology; however, the sample sizes were small and of low quality. This systematic review confirmed that it is not possible to draw conclusions regarding the effectiveness of reflexology and aromatherapy in multiple sclerosis.

Link to full paper: The effectiveness of aromatherapy and reflexology in neurodegenerative disorders: a systematic review and meta-analysis

Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease (Pigott et al., 2022)

Examining the literature, we found 36 studies looking at self-management in people with Parkinson's. Only four studies measured quality of life and none of these found an improvement. Components of the self-management interventions that were linked to positive effects were, information about resources; training psychological strategies, social support; and lifestyle advice and support. 

Link to full paper: Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease 

To develop the online and paper toolkits, findings from the qualitative focus groups and interviews were combined with systematic reviews to ensure that key stakeholders' self-management needs were the focus of the toolkit. The aim of this work was to:

Bring together the expertise of health and care practitioners, people with Parkinson's and carers to jointly design a self-management toolkit and a training programme for professionals to support the use of the toolkit. 

The findings from this work package are still being synthesised, written up and submitted for publication. When published they will be uploaded here.

Measures of fidelity of delivery and engagement in self-management interventions: A systematic review of measures (Rookes et al., 2022)

The study aimed to identify what the current measures of fidelity of intervention delivery and engagement for self-management interventions for long-term conditions are and whether there is treatment fidelity. Thirty-nine articles were identified as eligible, with 25 studies measuring fidelity of delivery, 19 reporting engagement and 5 measuring both. For fidelity of delivery, measures included structured checklists, participant completed measures and researcher observations/notes. These were completed by researchers, participants and intervention leaders. For engagement, measures included data analytics, participant completed measures and researcher observations. In complex self-management interventions, it is essential to assess whether treatment fidelity of each core component of interventions is delivered, as outlined in the protocol, to understand which components are having an effect. Treatment fidelity checklists comparing what was planned to be delivered, with what was delivered should be developed with pre-defined cut-offs for when fidelity has been achieved. Similarly, when measuring engagement, while data analytics continue to rise with the increase in digital interventions, clear cut-offs for participant use and content engaged with to be considered an engaged participant need to be pre-determine

Link to full paper: Measures of fidelity of delivery and engagement in self-management interventions: A systematic review of measures

Remote Consultations for People With Parkinson Disease and Cognitive Impairment: Interview Study With Patients, Caregivers, and Health Care Professionals (Pigott et al., 2022)

This study aimed to explore the experiences of remote consultations for people with Parkinson's disease and cognitive impairment from the perspective of service users and professionals and investigate considerations for future service delivery. Semistructured interviews were conducted remotely with 11 people with Parkinson's disease and cognitive impairment, 10 family caregivers, and 24 healthcare professionals. Overall, four themes were identified: “the nature of remote interactions,” “challenges exacerbated by being remote,” “expectation versus reality,” and “optimizing for the future.” The advantages and challenges of remote consultations for this population were identified. Consultations could be improved with increased support, practice, preparation, awareness of issues, and more time and flexibility within services.

Link to full paper: Remote Consultations for People With Parkinson Disease and Cognitive Impairment: Interview Study With Patients, Caregivers, and Health Care Professionals

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this (Nimmons et al., 2022)

The aim of this study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers. Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds.

Link to full paper: Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease (Davies et al., 2024)

This paper aimed to describe the development processes and the core components of a facilitated self-management toolkit to support people with Parkinson's disease to self-manage their condition. An iterative co-design approach was adopted and included the use of systematic reviews, qualitative methods and theory to develop the online self-management toolkit called Live Well with Parkinson's. This toolkit was developed with core aspects such as tailored information to the individual, a well-being section using an asset-based approach and problem-solving skills to create and maintain goals, symptom review and management sections and a tracker of medication, symptoms and activities/actions. The toolkit is fully manualised and facilitated by six sessions from a ‘supporter’ who is trained in behaviour change techniques. It can be shared with carers and healthcare professionals.

Link to the full paper: Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease

Once the toolkit was developed, a feasibility study was conducted to test the study's procedures and acceptability of the toolkit with 35 people with Parkinson's and their carers. Qualitative interviews were also conducted with 14 participants and 6 carers to develop a richer understanding of their experience. The aim of this work was to:

1. Test whether the toolkit is practical and acceptable for people to use in a feasibility study and adjust where necessary.

The findings from this work package are still being synthesised, written up and submitted for publication. When published they will be uploaded here.

Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self-Management Toolkit (Rookes et al., 2025)

This paper evaluated the feasibility and acceptability of the Live Well with Parkinson’s self-management toolkit through a single-group, pre–post feasibility trial. The toolkit, developed via co-design and informed by theory and evidence, was facilitated over six sessions by trained supporters. Findings indicated that the intervention and trial procedures were acceptable to participants and feasible to implement, supporting progression to a randomised controlled trial. Key considerations included participant engagement, delivery fidelity, and integration into routine care.

Link to full paper: Feasibility and Acceptability of Intervention and Trial Procedures of the UCL Live Well With Parkinson's Self-Management Toolkit

Patient Acceptability and Technical Reliability of Wearable Devices Used for Monitoring People With Parkinson Disease: Survey Study (Rookes et al., 2025)

This survey study explored patient acceptability and technical reliability of wearable devices used for monitoring Parkinson’s disease, with a focus on comfort, usability, and perceived usefulness. The study explored user experiences with various devices, focusing on comfort, usability, and perceived usefulness. Results showed that while many participants found the devices acceptable and helpful for symptom tracking, technical issues such as data accuracy and connectivity were common. The findings highlight the need for improved device reliability and user-centred design to support long-term adoption.

Link to full paper: Patient Acceptability and Technical Reliability of Wearable Devices Used for Monitoring People With Parkinson Disease: Survey Study

To test the effectiveness of the 'Live Well with Parkinson's' facilitated self-management toolkit a Randomised Controlled Trial is now underway. The toolkit aims to enable personalised care for community-living people with Parkinson's, to reduce disability and preventable hospital admissions, and to improve quality of life. Interviews with a sub-sample of participants and their carers will also conducted, as well as a process evaluation. The aims of this RCT are to:

1. Determine the clinical effectiveness of the 'Live Well with Parkinson's' intervention through a definitive Randomised Controlled Trial, with an internal pilot.
2. Determine the cost-effectiveness of the intervention from the perspective of the NHS and personal social services.
3. Determine the factors promoting or inhibiting the implementation of the toolkit in the NHS. 

Once data collection is complete and all findings have been synthesised and written up, the published papers will be updated here. 

The full published study protocol link: Clinical and cost-effectiveness of 'Live Well with Parkinson's' self-management intervention versus treatment as usual for improving quality of life for people with Parkinson's: Study protocol for a Randomised Controlled Trial

Key stakeholder engagement activities will be undertaken as part of work package 6 of the PD-Care programme. The main objective is to co-produce a stakeholder-driven actionable implementation plan and establish collaborative arrangements for the PD-Care toolkit to be routinely rolled out nationally (e.g. Parkinson’s disease specialists and primary care services in England). Stakeholder engagement activities will involve interactive workshops and interviews with diverse stakeholder groups, including PD-related interest groups, practitioners, NHS regional/local systems leaders, people with Parkinson's and their carers.