Page 1: Page 1

As a Parkinson's Nurse Specialist, you are invited to complete this survey focusing on pregnancy in women with Parkinson’s. Before you decide whether you would like to participate, please read this information which explains why this project is being run and what participation would involve.  

What is the purpose of this study?

This project focuses on women with Parkinson's or Parkinson’s-Plus syndromes who have experienced pregnancy since diagnosis. Approximately 5% of patients with Parkinson’s develop symptoms before the age of 40, with some women in this group becoming pregnant after being diagnosed with the condition. The incidence of Parkinson’s in pregnancy remains unknown, although anecdotally, most neurologists see only one or two, if any, pregnant women with parkinsonism over the course of their careers. Accordingly, there is little reported literature in this field, and there are no clinical guidelines regarding the suggested management of Parkinsonism in pregnancy. 

We are adopting a multi-step approach to better understand this clinical scenario, surveying obstetricians, neurologists, Parkinson's nurse specialists, midwives, and patients with Parkinson’s.

We would particularly like to hear from anyone who has experience of caring for patients with Parkinson’s during pregnancy. However, if you do not have direct experience of this, your contribution is still appreciated, as we would like to gauge healthcare professionals' working knowledge of the management of these patients.  

Who is doing the study?

This project is being run by Cardiff University School of Medicine. A final year medical student, Caitlin Young and consultant neurologist, Dr Kathryn Peall, are working together to collect information for this project. You can find their contact information at the bottom of this information sheet.

Do I have to take part?

Participation in this study is voluntary.

Who is eligible to take part?

Any Parkinson's Nurse Specialist.

How can I take part and what questions will I be asked?  

You are invited to complete a short survey relating to either your clinical experience of managing Parkinson’s in pregnancy, or how you would approach the management of a pregnant patient with Parkinson’s if they were to come under your care. The survey includes questions relating to changes in motor and non-motor symptoms during pregnancy, medication, complications during pregnancy and/or delivery, and the frequency and organisation of neurological review.

The survey itself should take around 15 minutes to complete.

Will my taking part in the study be kept confidential?

Yes. All survey responses are anonymous and will be kept confidential, in accordance with the Data Protection Act.

Can I decline or withdraw from the study?

If you do participate, you can still withdraw at any time before data collection has ceased and all details you provide will be destroyed. This information will not be included in further work. If you decide you would like to withdraw from the study, you can do this by quoting your reference code which will be allocated when you complete the survey. You will have the opportunity to keep a pdf copy of your survey responses which contains this code. You should then email movementdisorders@cardiff.ac.uk quoting this code. 

What will happen to the information I provide?

If you choose to participate in this study, all information that you provide will be anonymised and kept confidential in accordance with the Data Protection Act. Only members of the research team directly involved with the project will have access to survey responses provided, however they will not be able to identify where or from whom these have been received.

To ensure that the information gathered has maximal benefit, we will be writing a scientific report which summarises our findings. In the future, this report may be submitted for publication and presented at conferences.

Student contact details:

Caitlin Young

Youngc9@cardiff.ac.uk

Supervisor contact details: 

Dr Kathryn Peall

pealKJ@cardiff.ac.uk

Address for correspondence: Division of Psychological Medicine and Clinical Neurosciences, 3rd Floor, Hadyn Ellis Building, Maindy Road, Cardiff, CF24 4HQ

Ethical approval has been obtained from Cardiff University’s School of Medicine Research Ethics Committee.

Address for correspondence, concerns or complaints: School of Medicine Research Ethics Committee, Main Building, Heath Park, CF14 4XN, Wales, UK