RecruitingOBSERVATIONAL

Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes

This study is investigating how people with rare brain conditions, known as atypical Parkinsonian syndromes (like Progressive Supranuclear Palsy, Corticobasal Syndrome, and Multiple System Atrophy), use healthcare services. These conditions can cause problems with movement, balance, and thinking. Researchers want to compare the care received in different areas of the UK, some with special clinics and some without, to see how this affects patients' and their carers' quality of life. The goal is to find out which types of support and specialist services are most beneficial and reduce unexpected hospital visits.

At a glance

Status

Recruiting

Sponsor

University Hospital Southampton NHS Foundation Trust

Enrolment target

198

Start

10 Oct 2022

Estimated completion

15 Jul 2027

Progressive Supranuclear Palsy Cortico Basal Degeneration Multiple System Atrophy

What is this study about?

This study is looking into how specialist NHS services help people living with certain rare conditions affecting the brain. These conditions, such as Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and Multiple System Atrophy (MSA), are called 'atypical Parkinsonian syndromes' because they can look a bit like Parkinson's disease, but are different. They can make everyday tasks challenging by affecting movement, balance, speech, and thinking. Currently, there aren't cures or many treatments for the symptoms, which means these conditions can worsen over time and significantly impact the lives of both patients and their families.

Because these conditions are severe and complex, patients often need a lot of support and may even end up in hospital unexpectedly. The NHS provides different levels of service. Sometimes, patients see a neurology specialist on their own. Other times, they might attend a special clinic where a team of healthcare professionals works together. This team could include speech therapists, physiotherapists, occupational therapists, palliative care specialists, and a specialist nurse, all working with a clinic coordinator. This team approach might be more expensive, but it could offer more information and support, potentially improving how patients and carers manage the condition and their overall quality of life, while also reducing the need for emergency hospital visits.

The researchers want to compare these different ways of providing care. They will look at how services are delivered in various areas, some of which have comprehensive specialist clinics and support teams, and others that do not. By doing this, they hope to understand which parts of the NHS care are most helpful and how the availability of support services and specialist clinics affects the well-being of patients and their carers. The findings could help the NHS improve care for people with these challenging conditions.

Key takeaways

Aims to improve support for rare brain conditions (PSP, CBS, MSA).
Compares different types of NHS care and their impact.
No new treatments or medications are involved.
Focuses on quality of life for patients and their carers.
Findings could help shape future healthcare services.
Open to adults aged 18+ with a relevant diagnosis.

Who may be eligible?

To take part in this study, you need to be at least 18 years old and able to understand and agree to participate. You or the person you care for must have a confirmed diagnosis of Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), or Multiple System Atrophy (MSA). Sometimes, people with similar conditions, like a form of Alzheimer's disease that looks like Corticobasal Syndrome, might also be considered.

However, you won't be able to join if you or the person you care for doesn't meet these age and diagnosis requirements, or if you have a condition that isn't progressive or linked to these neurodegenerative diseases. Also, if the main researcher feels it's not suitable for you to take part due to other health issues or if you are already involved in other studies, you might not be eligible. The aim is to ensure the study is safe and appropriate for everyone involved.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you, or the person you care for, aged 18 or older?
Do you have a diagnosis of PSP, CBS, or MSA (or similar progressive neurodegenerative condition)?
Can you understand and agree to take part in the study?
Do you have a progressive condition, not just a static one?

Answer every question to see your result.

What does participation involve?

If you decide to take part, the study will involve looking at your health service use and quality of life. The details of how this is collected (e.g., through questionnaires, interviews, or reviewing existing medical records) aren't specified but will be fully explained to you before you agree to participate. There are no new medications or treatments involved in this study. The total duration of your participation, including any follow-up, will also be clearly communicated to you.

Potential risks and benefits

Participating in this study might offer the benefit of contributing to a better understanding of how specialist services for these conditions can be improved, potentially helping future patients and their families. There are no known physical risks as this study does not involve new treatments or procedures. The main potential risk is that discussing your experiences might bring up emotional discomfort. You have the right to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Wessex Neurological Centre
Verified postcode
Southampton, United Kingdom· Recruiting

Common questions

What are atypical Parkinsonian syndromes?

These are a group of rare brain conditions, including PSP, CBS, and MSA, which can cause problems similar to Parkinson's disease but are different and tend to worsen more quickly.

Will I receive new treatment if I join this study?

No, this study is observing current healthcare services and does not involve any new medications or treatments.

Who is funding this research?

The study description doesn't specify the funding source, but this information should be available from the research team.

How will my personal information be kept private?

The research team will explain exactly how your data will be protected and kept confidential, in line with privacy regulations.

What will happen to the results of the study?

The results will be used to understand and potentially improve healthcare services for people with these conditions, and will likely be shared in research publications or presentations.

How to find out more

Trial administrator Neurodegenerative research team

srikanth.anugu@uhs.nhs.uk 0044 2381206132 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.