By London YPAG,
I had the pleasure of attending GOSH YPAG’s last meeting of 2022!
Our first three sessions were with researchers re-visiting the group!
First of all, the lovely Dr Gabriela Petrof, a Consultant Paediatric Dermatologist at GOSH, came to update us on her work surrounding mesenchymal intravenous stromal cell infusions in children with a recessive condition called EB (Epidermolysis bullosa). This is a condition where the skin is very fragile and any trauma or friction can cause blistering. Dr Petrof is leading a double blinded placebo control study, called Mission EB, to help develop a possible stem cell treatment to repair the epidermis. She also explained what a placebo was and the importance of controlling the placebo effect. Additionally, Dr Petrof also addressed potential ethical concerns surrounding clinical trials, particularly relating to some participants not receiving treatment due to receiving a placebo in a double blind procedure, hence, having the addition of a crossover trial to ensure each child receives treatment.
We were then able to ask various questions such as the practical aspects of the trial and also future aspirations and developments.
After a short break, we had a presentation by Dr Stefan Guldin and Lisa Pfaffenrath from University College London (UCL), Department of Chemical Engineering to discuss their project, ChromaDose. GOSH YPAG have been working with the team over the past few years. This project aims to deliver an innovative drug testing device to measure drug exposure, with particular interest in chemotherapy drugs. The ChromaDose team visited GOSH YPAG in order to get young people’s perspective on their patient information materials for therapeutic drug monitoring. The aim of these materials is to provide an insight into the treatment whilst also being engaging, inclusive and understandable for children of varying ages.
Following lunch, Dr Wesley Hayes, a consultant nephrologist at GOSH, delivered a presentation which gave updates on the PLUTO study. This study aims to assess Plasma-Lyte usage during a kidney transplant and the effects of varying levels of Plasma-Lyte on patient outcomes once the surgery has been completed. Dr Hayes asked us about what our thoughts were on the primary outcome goals, particularly surrounding days spent at home.
This was followed by a super fun Christmas quiz from our wonderful tech wizard Dauda Bappa and Alice Piapi our GOSH YPAG facilitator!
We were then given a talk by Dr Lee Hudson, a consultant general paediatrician at GOSH, on his research surrounding the mental health admissions to paediatric wards study (cleverly named MAPS). Dr Hudson talked about the need to improve the quality of care that children and young people receive following a mental health crisis, usually within a general children’s ward. There are major issues currently regarding the quality of care especially as a result of the pandemic. Since the pandemic there have been more children needing these services, however, there is limited space within the wards which are not well equipped for mental health conditions. Additionally, staff have received limited training within these areas adding to the gap of the quality of care received by these patients. I found it really interesting the way in which the study aims to address the situation, by looking at data in hospitals and on NHS digital to find trends and interviewing patients, families and health workers to ask their opinion. This is all to get an idea of the scale of the situation in order to inform policy makers and set out realistic plans to be able to support children and young people.
Finally, we had the C-POS team give updates on their children’s palliative care outcome survey. Debbie Braybrook and Inez Gaczkowska from Kings College London both came to collect feedback on their questionnaire which hopes to give an insight into the level of satisfaction a child feels after spending time in hospital. This was done to make sure that the format was straightforward to understand and engaging by using graphics and emojis to appeal to a younger audience.
Overall, a jam-packed and great way to round off all the work of GOSH YPAG for this year! It is always so inspiring to be able to witness researchers and healthcare professionals spend time improving the quality of care through innovative ways and I look forward to hearing from them all again soon.
#YPAGrocks
Parveen
Hello, I hope you’ve had a great summer and many more to come. By the way, I’ve just started secondary school and we’ve just resumed YPAG. Let me tell you what happened at our September YPAG meeting: A researcher came in to speak to us about about the risks of congenital hypothyroidism and the results […]
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The Centre of the Cell produced this lesson plan for age 15-18 students. You can find this lesson plan by clicking here
