FutureMS: the first meeting. A blog.
7 December 2017
We are delighted to feature two blog posts by a guest science writer, Dr Hannah Parkin. In this, the second blog, Hannah describes the experience of Kate, a participant in the FutureMS research study.
Meet your research nurse
Kate (not her real name) is welcomed in to the Anne Rowling Clinic with a warm cup of tea. “How are you today?” asks research nurse Christine Batchelor, who is known as Chris. There is no feeling of Kate being a ‘subject’ in a study; we have a relaxed chat about how things are going and how she is feeling in and out of the MS bubble.
Kate was diagnosed with relapsing-remitting MS two months ago following a few years in the dark over symptoms doctors couldn’t resolve. She tells us she decided to participate in FutureMS following an NHS appointment with Prof Chandran, one of the lead neurologists in NHS Lothian and Chief Investigator of FutureMS. Talking to him personally made her feel confident that this was an effective and easy way of contributing to MS research, both now and critically, for the future.
Ideas from the front line
Chris begins by describing the details of the FutureMS project to Kate. She first answers the question “What are we trying to achieve?” The idea for FutureMS came from those at the front line - the consultants who see and treat hundreds of people with MS around Scotland. They recognised that “I don’t know” is a frustrating outlook for both them and the person who has been newly diagnosed.
Thanks to the exciting stage scientists worldwide have reached in MS research, the team had good ideas about what they could look for as possible prognosis and treatment markers. For example, several genes are thought to be different in some people with MS, and a key part of the FutureMS project is to work out if this is true.
Chris explains the hows and whys of today’s blood samples, questionnaire and clinical examination, and reassures Kate that if she is not comfortable with any, she is free to change her mind at any time. We talk about the second meeting in a year’s time and Chris explains that the results of the FutureMS project will only be analysed once all participants have had both meetings.
Kate is enthusiastic about the project, saying MS feels to her “like no-man’s land, it seems like an area of medical mystery”. She signs the FutureMS consent form that confirms she has read and understood the study, that she is here voluntarily, that the study is not part of her MS treatment, that her GP will have access to the extra scans and blood tests, and that she will not be paid to take part. A separate form asks Kate if she would be happy to be contacted again for other studies, and Chris discusses that patients themselves often help develop projects according to what they think are important questions. As we wait to see what research finds in the coming decades, Kate is asked to supply an extra blood sample to be frozen so we can answer new questions more quickly. Kate is happy with everything she’s heard and the forms are signed. “Welcome on board!”
Let's start with a questionnaire
The FutureMS study begins with a questionnaire concerning Kate’s personal details and medical history. She is asked about her job, route to diagnosis, her number and nature of relapses and any medication she is currently taking. Chris checks Kate has not received any treatment for her MS so far, as this is a critical requirement of the study. Once her information is up to date, the blood samples are taken. While in the relaxed company of Chris, Kate describes her dislike of the MRI machine. She is quickly put at ease as Chris gives her details of how long her scan will take, and tells her she can request music of her choice.
The next part of the project is the lifestyle questionnaire. The aim is to assess how, right now, your MS is affecting your life, work and personality. It only takes around 15 minutes to complete on the FutureMS tablet computer, and requires no written answers - just a series of ‘tick boxes’ with multiple answers to choose from. This personal account of how your MS is affecting you is an important part of the FutureMS study, as we want to learn more about the psychological effects of MS as well as the physical ones.
We move on to the clinical exam, a number of simple tasks testing Kate’s physical function – no undressing required! The back of her eyes look “beautiful” and her sight and visual field are checked. Kate’s strength, balance and reflexes are all as expected. Chris moves on to the standard MS tests that are used worldwide and measures three critical functions: lower limb, upper limb and cognition (thinking). For the first, Kate is simply asked to walk 25 feet, up and down the corridor at normal pace. This is timed twice. Next, upper limb function is measured using the 9-hole peg test. Kate is asked to insert 9 pegs into 9 holes, remove them and repeat twice with each hand. Finally, Kate performs the Paced Auditory Serial Addition Test (PASAT), a simple addition test requiring you to listen to numbers called out on a CD. These tests are great ways of testing Kate’s fine motor and cognitive abilities.
A quick measure of blood pressure, height and weight completes Kate’s first FutureMS meeting with Chris in around 2 hours, with just the 20-minute MRI scan to go. Kate was asked to keep the FutureMS team up to date if she starts any drug treatments. She will receive a reminder to meet again in a year’s time for the second and final meeting that will be similar to the first but without having to supply blood samples. We discuss the project’s potential to go beyond one year, as we hope to continue to follow the MS journeys of these invaluable volunteers.
The benefit of taking part
Participating in FutureMS has set Kate in good spirits: “It’s just nice to feel like you’re helping, almost a comfort thing. It would be great just to have some idea of what I might expect from my MS.”
About the author
Hannah Parkin is a freelance science writer who has recently completed a PhD in Developmental Neuroscience at the University of Edinburgh.