The interview with PH children's research nurses Lynsay Macdonald & Eleni Tamvaki

Lynsay and Eleni work together as part of the pulmonary hypertension research team at Great Ormond Street Children’s Hospital (GOSH). The pair have both worked at GOSH since 2016 and while Lynsay began her current role in 2018, Eleni started hers just this summer. Lynsay’s background is in adult cardiac nursing and Eleni’s career path took her from Athens to London. She completed a masters in paediatric nursing in 2010 and after crossing countries, she started working at GOSH in the cardiac intensive care unit. With a passion for discovering new things, and what she describes as ‘limitless curiosity’, she completed a PhD in June 2019 and started her current role in research a year later.

Eleni

Eleni in the lab Lynsay

Q. Can you explain more about what your research roles involve? Lynsay: My role at GOSH is to coordinate the set-up and running of research studies related to pulmonary hypertension. I liaise with researchers throughout the UK and worldwide to help support their studies. Eleni: My role involves the recruitment of children into studies, designed to investigate the causes of pulmonary hypertension and discover new treatments or improve the outcomes. This includes data collection, study set-up, and my favourite, lab processing.

Q. Can you tell us about any current research projects or trials you’re working on? Lynsay: We have several studies currently running at GOSH and patients’ families may be approached by myself or Eleni if they are attending a PH clinic or have a stay as an inpatient. One study we are currently involved in is a large genetic study (www.IPAHCOHORT.com) which looks at both patients and their relatives to try to provide a better estimate of the risk of developing pulmonary arterial hypertension (PAH) in family members, and to identify new ways to treat the disease. The study started with recruiting adults with PAH and now GOSH are able to contribute with the inclusion of children. The study is running until 2022 and we aim to recruit as many PAH families as possible during this time.

Q. What does a typical day at work look like for you? (If there is such a thing!) Lynsay: There is no such thing as a typical day in research, our work at GOSH is very varied. Some days we are screening patients to check who would be eligible for studies and reaching out to them. Other days we attend clinics to complete consent forms with families and answer questions they have about the studies they have been invited to. We also spend time in the clinical laboratory within the on-site Zayed Centre for Research. We process research samples and get them ready to be sent to the study that they have been collected for. We also collect and submit research data from medical records, organise the set-up of new PH studies and keep up-to-date with new and emerging PH research. Eleni: Coming from the crazy clinical environment of an Intensive Care Unit I am delighted to say that a typical day at work starts with a cup of coffee, sitting comfortably in my office! I then have to answer countless emails, coordinate the studies, and resolve issues (which magically appear every day). >>>

Q. What do you enjoy most about your work? Lynsay: I love meeting our GOSH families and getting to know all of our amazing children. Families travel from all over the UK to be seen at GOSH. I was really fortunate to be able to attend the PHA UK Family Weekend in 2018 and it was incredible to be able to see all of our families socialise and meet there. Eleni: My favourite part is when I meet all these wonderful families and children, and I also love being a member of the PAH team here in GOSH.

Q. And what is the most challenging aspect? Lynsay: There are many regulations that are involved in research, so setting up new studies can be quite a complex task, ensuring that we meet the highest of standards before we can start recruiting. This can be quite challenging as it can take some time to ensure that the study is ready. Eleni: I think what I find more challenging is asking children to give blood, which of course involves a prick. I am going back to their age, when every time I was asked to give blood for clinical tests I was screaming and kicking. However, these children are so brave - much braver obviously than me.

Q. Who or what inspires you in your work? Lynsay: The incredible PH children I meet at GOSH inspire me to continue in research and find better way to improve quality of life and improve the treatment options that are available to them. They are full of personality and silliness, even when faced with complex health challenges. Eleni: Lynsay. I couldn’t do anything without her reassurance and her support. And of course, Shahin (Moledina, lead clinician for the National Paediatric Pulmonary Hypertension Service). He is passionate about his job and he cares so much for children with PAH.

Q. What are you most proud of in your career so far? Lynsay: I think I am most proud of completing my first nursing degree in 2010. That moment has really shaped me into the person I am today, influencing not only my professional career but the path which has led me to living in London and the many adventures I have had along the way.

Q. What’s the best piece of advice that you’ve ever been given, and who was it from? Lynsay: One of the best pieces of advice I have ever been given is: ‘You can’t pour from an empty cup’. I think that it is really important, especially in recent times, to make time for yourself and do the things that make you happy. That might just be taking an extra second hugging your child or walking outside in the fresh air, but it’s important to appreciate that moment in time and the joys that small things can bring. Eleni: The best piece of advice I’ve been given, by my parents and partner, was to fly away from home and follow my dreams. Q. Finally, away from the hospital, how do you relax? Lynsay: When I am not running around after my own toddler, I like to participate in long distance running events. I recently completed the Virgin London Virtual Marathon in October for the first time and would love to be able to run the London Marathon when it returns. Another goal is to complete the ‘Dopey Challenge’ in Walt Disney World, a 48.6 mile mega-marathon which is split up over four consecutive days! Eleni: Outside of work I spend time with my two boys, and I enjoy their homework tasks more than them but I am not allowed to do them. I like to solve puzzles in my free time. What relaxes me is the sea view, but as I cannot have this often, I relax watching TV on the sofa with a cup of hot chocolate. .

A message from the National

Cohort Study of Idiopathic and Heritable PAH study team

The National Cohort Study has been recruiting adult patients and relatives since 2014 but with GOSH recruiting children we can now do further research covering all ages affected by PAH.

Since the start of the study we have recruited over 900 patients, relatives and healthy control subjects, so thank you to everyone who has helped us along the way!

One of the main aims of our study is to investigate the genetic causes of PAH, and how genetic variation affects outcome and response to treatment.

We are now particularly keen to recruit first degree relatives of patients who have idiopathic or heritable pulmonary arterial hypertension (PAH). This includes parents, children and siblings.

Relatives, whether they are adults or children, are currently invited to a yearly assessment at their nearest

PH centre and we can reimburse travel expenses (children can only be seen at GOSH).

During the pandemic, we have struggled to recruit relatives, so we are looking at more alternative ways of following up both our patients and relatives for the study. This is likely to include telephone or video visits and the use of web-based platforms and apps.

If your family would like to be part of the National Cohort Study of Idiopathic and Heritable PAH please contact Eleni or Lynsay using the details below: Eleni.Tamvaki@gosh.nhs.uk / 02074059200 ext. 38592 Lynsay.MacDonald@gosh.nhs.uk / 02074059200 ext. 38587

You can find out more about the study by visiting www.ipahcohort.com