Mapping Parkinson's Disease Needs and Services

What is the project about?

This timely HRB-funded research project is ongoing. The programme of research involves: 1) estimating the prevalence of Parkinson's in Ireland; 2) mapping and evaluating the range of available health services for people with Parkinson's across the country; and 3) exploring the unmet needs of people with Parkinson's and their perspectives on health service access and provision.

Who is leading the project?

This project is led by principal investigator Prof. Suzanne Timmons of the Centre for Gerontology & Rehabilitation, UCC. Prof. Timmons says “this research is helping us to understand how we can improve services, to support people with Parkinson’s in Ireland to live healthier and better quality lives”. Paula Gilmore, CEO of the Parkinson’s Association of Ireland (PAI), is the ‘public and patient involvement’ Co-Lead on this project.

Importantly, the project team also includes a person with Parkinson’s disease, Mr Tony Wilkinson, who is a vocal advocate for people with Parkinson’s, at both a national and local level. Tony has acted as a co-researcher on this project, to make sure the research asks and answers the important questions.

Why is this research important?

We know that there has not been enough investment made in healthcare services to improve care for people with PD in Ireland. For example, services are under-provided in certain areas. Where PD clinics/services do exist, under-resourcing can be a significant problem, leading to lengthy wait lists. This situation can have negative effects on people with Parkinson’s, in terms of their wellbeing and quality of life. It can also lead to more hospital admissions, which might have been avoided if services in the community were better able to provide the right care and support, at the right time. 

The data collected during this project will provide vital information for important decision-makers in the HSE and Department of Health, to inform future PD service planning and development.

Project Outputs

1. Quality Indicators (QI)

We developed QIs for Parkinson's disease care based on a review of this existing emprical evidence and PD care guidelines:

• QI-Evidence & Guidelines

2. Audit Tool

Using the above quality indicator development process, along with stakeholder consultation and steering group meeting consensus, we developed an audit tool to evaluate the baseline quality of PD care in specialist PD/movement disorder clinics. The tool is similar enough to the UK tool to faciliate some comparison; however it has been tailored specifically for the Irish context.

• Map PD_Audit Tool

Findings

PD Prevalence and Specialist Service Mapping (Preliminary, final report forthcoming)

Below is a map of the 14 specialist PD/ movement disorder clinics in the Republic of Ireland. This data was ascertained via a survey of neurologists and geriatricians, as well as stakeholder consultation and snowball sampling.

• Mapping of Specialist PD Services (N=14)

• Prevalence Estimates-Executive Summary

Accepted Manuscripts

The manuscript below details the findings of the national survey of people living with PD in Ireland. The survey is nationally-representative, and contains 1402 complete responses.

1. Title: Experiences of health service access and use for people living with Parkinson’s disease in Ireland: A national survey  Journal: Health and Social Care in the Community

2. Title: Experiences of health service access: A qualitative interview study of people living with Parkinson's disease in Ireland  Journal: Health Expectations

Impact

Policy Briefs

We developed two policy briefs in support of the Neurological Alliance of Ireland's 'Patients Deserve Better' campaign.

The first brief details our findings in relation to the need for more PD nurse specialists.

• PD Nurse Specialist Policy Brief

This second brief details our findings in relation to poor access to multidisciplinary team health and social care professionals.

• HSCP Policy Brief

Newsletter

The Parkinson's Association of Ireland's Summer 2022 newsletter published the above policy briefs, furthering impact:

• PAI Newsletter-Summer 2022

Oireachtas Summary Report

The Oireachtas Committee on Health hearing on 'Community Neurorehabilitation Teams'

The Neurological Alliance of Ireland requested data from the Mapping Parkinson's project for us in the above-mentioned hearing. This occurred on May 17th, 2023. Below is the summary report we submitted for this meeting:

• Summary Report for Oireachtas Meeting

Note: We are still compiling the final PD Care audit report for this project, and a National Report detailing the user experience of PD health and social care services in the Republic of Ireland.

These reports will be available here later in 2023.

Contact us

If you would like further information on any aspect of this study, please contact the project manager, Dr Emma O’ Shea.

Email: emma.oshea@ucc.ie 

Introducing Wearable Technology into Parkinson’s Disease Care (SENDOC)

What is the project about?

This project is assessing the potential role of wearable technology in the treatment of people with Parkinson’s Disease, especially those living in remote areas. We have two main goals. First, we want to understand what design features are important to people with Parkinson’s Disease. Second, we will evaluate the accuracy of existing devices to measure hand motor functions in people with PD. With this information, we hope to develop a novel wearable device that can accurately measure hand motor function and relay that information back to Parkinson’s Disease specialists.

Why is this research important?

Wearable technology has the potential to provide rich data to PD specialists who can use that information to modify treatment plans and monitor rehabilitation. Healthcare providers can use the information to fine tune medications and monitor the progression of the disease.

Who is involved?

The EU Northern Periphery and Arctic Programme is funding this project. Researchers at the Centre for Gerontology and Rehabilitation at UCC and Tyndall Institute in Cork are executing the research. People with Parkinson’s Disease are volunteering their time to the research by testing the devices and providing feedback.

Project Update (15/06/2021)

We have published a review of what is already known about what people with Parkinson’s want in a wearable device, and a second on how these devices perform in terms of accuracy.

Contact us

If you would like further information on any aspect of the SENDOC study, please contact Lorna Kenny

Email: lorna.kenny@ucc.ie