Understanding and supporting patients, carers and clinicians with personalised prognostic information for Parkinson’s disease: a qualitative study and development of a toolkit of resources

Background Parkinson s is the second most common neurodegenerative disease and the fastest growing neurological disorder1. It is a highly variable condition with over 40 associated symptoms that may present in different combinations, at different points in the disease course. Giving people information about how their disease is likely to affect them in the future is an important part of patient-centred care and care planning, which support effective use of healthcare resources. It has been difficult to provide prognoses for people with Parkinson s (PwP), but research is rapidly evolving and evidence is now available that could be used to enable PwP and their carers to make more informed decisions about their future. However, we know that PwP, carers and clinicians often find it difficult to discuss prognoses and engage in shared decision making about care believing it would be upsetting2. Aim The aim of this research is to develop tools and resources for PwP, carers and clinicians to support the appropriate use of prognostic information and subsequent care planning. Objectives Identify the preferences and needs of PwP and carers regarding prognostic information and care planning. Identify the barriers and enablers perceived by clinicians regarding Parkinson s prognostic information and care planning. Develop a toolkit of resources to include: Resources to support PwP and carers in shared decision making around prognosis and care planning. Training materials for clinicians in delivering prognostic information and supporting PwP and carers to engage in shared decision making and care planning. Methods Guided by Intervention Mapping and the Person-Based Approach to intervention development, we will conduct focus groups and interviews with PwP and carers (Work Package (WP) 1) and clinicians (WP2) to address objectives 1 and 2. The findings from this qualitative work will be used to set guiding principles for the development of resources to support prognostic discussions between PwP, carers and clinicians. Resources will be iteratively refined using think aloud interviews with PwP, carers and clinicians (WP3). The outcome will be a toolkit of resources ready for PwP, carers and clinicians to use in practice (objective 3). PwP and carers have helped us develop this application and will be involved throughout the project both as co-applicants and through a PPI group. Timelines for delivery Two-year project, starting March 2025. By month 7: Developed protocol, research materials; gained ethical approval By month 13: Data collection for WP1 and WP2 complete By month 22: WP3 complete, resources finalised By month 24: Dissemination and write-up complete. Anticipated impact and dissemination Parkinson s UK (PUK) are supporting this application and will publish and maintain the resources. We will work with PUK, our PPI group, community groups and policy specialists to develop a robust dissemination plan. The resources will enable increased engagement in prognostic and care planning conversations, leading to more referrals to appropriate care services. Longer term, we expect a reduction in inappropriate admissions, more efficient use of resources, and PwP and their carers feeling better supported to think about and plan for their future.