Prime-Parkinson Cross-sectional Study
Research type
Research Study
Full title
Prime-Parkinson Cross-sectional Study
IRAS ID
285041
Contact name
Emma Tenison
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 6 months, 2 days
Research summary
Research Summary - We know that having Parkinson’s disease (PD) can have a negative impact on quality of life. People with PD may experience other health problems such as depression, memory problems or bladder issues, and are also more likely to be admitted to hospital than people without PD. As PD progresses, many people will need the help of a caregiver. Often this care is provided by friends or family members who are not paid for the care and support they give. Being a caregiver can be stressful and put a strain on the caregiver's own physical and mental health.
We would like to understand the needs of people with PD (and other related conditions such as Lewy body dementia), who are cared for by a specialist at the Royal United Hospital in Bath, in terms of their stage of disease, what symptoms bother them and what other health problems they experience alongside their PD. We will ask participants to complete questionnaires on one occasion only. We also hope to find out about the help which people with PD receive, particularly from unpaid caregivers, such as family and friends. We will collect information about the experiences of unpaid caregivers, how caring impacts upon their quality of life and what strategies they use to cope with their role.
It is important for us to understand the needs of people with PD and their caregivers, including people with PD who have generally been excluded from previous studies, so that we can develop better ways to look after these groups. In the future we plan to use the information from this study to help us design and test out a future research study about caring for people with PD and supporting caregivers of people with PD.
Lay Summary - Why was the research needed?Parkinsonism is a term that describes several health conditions which cause problems including slow movement, stiffness and difficulty walking. These include Parkinson’s Disease (PD) and related conditions such as progressive supranuclear palsy, Lewy body dementia and multiple system atrophy.
We know that having parkinsonism can affect people’s quality of life. People with these conditions may have other health problems such as depression, memory problems or bladder issues. As parkinsonism gets worse over time, patients may need the help of a caregiver. Being a caregiver can put a strain on the caregiver’s own physical and mental health.
Parkinsonism is more common as people get older. This means that patients are often also living with other long-term health problems, as well as frailty. People who are older, have multiple health problems, or have memory problems are often left out from research studies.
We wanted to understand the needs and experience of a group of people with parkinsonism that represented the many different people with these conditions in the ‘real world’. We also wanted to learn about the experiences of unpaid caregivers.
What happened during the study?
We posted invitations to patients with parkinsonism living in the area around Royal United Hospital, Bath. Any friend or family member who supported someone with parkinsonism as their “caregiver” was also invited to take part. After participants agreed to take part, they were sent a questionnaire booklet to fill in at home.
Some patients were not able to decide for themselves about whether to take part, for example those with advanced dementia. In these cases, we asked a close friend or family member whether the person with parkinsonism would want to take part. The close friend or family member then filled out questionnaires for them.
We telephoned people who did not respond to the invitation letter to answer their questions and support them to take part if they wanted to do so.
What public involvement was there in the study?
When we were designing the study, we asked for feedback from some members of the public with Parkinson’s. They helped us to design our participant information booklet and consent forms. They also told us what they thought was the most suitable word to use to refer to a friend or family member who supports someone with Parkinson’s without being paid to do that.
Who took part in the study?
We invited over 1000 patients with parkinsonism. 542 of those patients agreed to take part in the study. This included 38 patients who were unable to make their own decision about whether to take part. We also recruited 376 caregivers.
We are hugely grateful to all of our participants who gave up their time to take part in this study.
What were the results of the study?
1) The benefit of telephone calls to support recruitment
We were able to telephone 650 of the 678 patients who did not respond to the postal invitation. 167 patients decided to take part after one or more telephone calls with the study team.
We found that the telephone calls helped us to recruit certain people who might not have joined the study otherwise. People recruited after a telephone call were more likely to be female, living in a care home, diagnosed with a rarer type of parkinsonism and to be frailer.
2) A study group which more closely matched the ‘real world’
We compared the participants who took part in this study to the people we know from medical records are living in the UK with parkinsonism. We found that the participants who took part in our study more closely matched the ‘real world’ situation than people who usually take part in parkinsonism studies. For example, over half of our study participants were over the age of 75 years and some people living in a care home took part.
This suggests that the ways we recruited – our “recruitment strategies” – helped us to be more “inclusive”.
3) The presence of other health conditions and symptoms affecting everyday life
Our results showed that people with parkinsonism are often also living with frailty, muscle loss, and disability. These often overlap. Almost two thirds of people had two or more long-term health conditions as well as parkinsonism. We found that many people also had symptoms such as bladder and bowel problems.
How has this study helped patients and researchers?
We have published an article about our successful recruitment strategies in the scientific journal Age and Ageing. We hope that this will help other researchers to design their studies to include a wider range of patients. We have also presented findings from this study at national and international scientific conferences.
Has the registry been updated to include summary results?: Yes
If yes - please enter the URL to summary results: https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fwww.isrctn.com%252FISRCTN11452969%253Fq%253DISRCTN11452969%2526filters%253D%2526sort%253D%2526offset%253D1%2526totalResults%253D1%2526page%253D1%2526pageSize%253D10%2FNBTI%2F3ly8AQ%2FAQ%2Fe7be9eba-1e97-4f3d-a0ed-475f55b6d435%2F2%2FakVMkH58mn&data=05%7C02%7Cbrightonandsussex.rec%40hra.nhs.uk%7Cb0576fcfcf1540320e7408dd703ffb03%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638790142272348439%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=H1lONcpSqlUA5AuUoH6BbGCbbGU25AhqSXg15HswUYI%3D&reserved=0
If no – why not?:
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: Yes
If yes, describe or provide URLs to disseminated materials: - peer reviewed publication
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(1219)If pending, date when dissemination is expected:
If no, explain why you didn't follow it:
Have participants been informed of the results of the study?: Yes
If yes, describe and/or provide URLs to materials shared and how they were shared: Plain English summary uploaded here:https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fprimeparkinson.blogs.bristol.ac.uk%252F2025%252F03%252F31%252Fthe-prime-cross-sectional-study-a-summary%252F%2FNBTI%2F3ly8AQ%2FAQ%2Fe7be9eba-1e97-4f3d-a0ed-475f55b6d435%2F11%2FlBfzIaaMUl&data=05%7C02%7Cbrightonandsussex.rec%40hra.nhs.uk%7Cb0576fcfcf1540320e7408dd703ffb03%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638790142272491284%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=2DtA0ZNreuv0clNpnE62yw5Ig8MolWuyMUVzpgw95kE%3D&reserved=0
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
20/LO/0890
Date of REC Opinion
31 Jul 2020
REC opinion
Further Information Favourable Opinion