Optimising the patient journey for paediatric stem cell transplant patients

Our project

This page is dedicated to our exciting new research project on optimising the patient journey for paediatric stem cell transplant patients, particularly focussing on those who require PIC admission as part of this.

This project is a collaboration between the paediatric intensive care and paediatric bone marrow transplant teams as well as epidemiology colleagues from Newcastle and Kings College, London.

Please have a read to better understand what we are doing and if you are interested in getting involved or email Liz Day on: elisabeth.day3@nhs.net.

The next event is planned for Tuesday 9 April.

Thanks so much!

Summary of the project

Background

Haematopoietic stem cell transplant (HSCT), more commonly known as bone marrow or stem cell transplant, is used to treat various childhood diseases including cancers and disorders of the immune system.

Children can become extremely unwell around the time of transplantation and require admission to intensive care. Whilst most children who are admitted to paediatric intensive care (PIC) in the UK for other conditions survive, children admitted after HSCT often die and it is unclear exactly why this is. There is a lack of national data.

The few UK scientific studies that exist were based in single hospitals meaning small patient numbers and therefore significantly more data is needed to make national recommendations. Identifying reasons why this group of children have poor outcomes could have a significant impact on the way patients are cared for in future, in areas from communications with families to clinical decisions prior to and throughout any PIC admission.

Aim

We aim to improve our understanding of paediatric intensive care in this patient group, so we can make better decisions with families and improve the care we can offer around intensive care stays.

Methods

We plan to look at two aspects within this research: data (including demographics, treatment, interventions, outcomes etc.) for patients undergoing HSCT from around England and experiences of patients, parents and clinicians.

The data analysis will involve combining data from around England collected by both HSCT centres and PICs to better understand the group of children who require intensive care following HSCT and to describe any potential risk factors for admission or poor outcome at a national level.

We will also look at the patient journey in greater detail through interviews with parents, patients and clinicians (both HSCT and PIC) to gain better insight into key priorities for these groups and therefore establish where care can be optimised at all stages.

Who are the team?

Dr Liz Day, paediatric intensive care consultant.
Dr Christo Tsilifis – paediatric specialty trainee, special interest in paediatric immunology/infectious diseases.
Dr Eleanor Badger, paediatric specialty trainee, special interest in paediatric intensive care.
Dr Rachel Agbeko, paediatric intensive care consultant and associate clinical lecturer, translational and clinical research institute, Newcastle University.
Dr Catherine El Zerbi, Research Fellow for Supporting Children & Families, NIHR Applied Research Collaboration for the North East & North Cumbria, Newcastle University.
Professor Lorna Fraser, Professor of palliative care and child health, Cicely Saunders Institute and School of Life Sciences and Population Health. Associate Dean for people and talent, Faculty of Nursing, Midwifery and Palliative Care, King’s College London.
Professor Andrew Gennery, Sir James Spence Professor of Child Health, Professor and honorary consultant in paediatric immunology + HSCT, Translational and Clinical Research Institute, Newcastle .University.

Ways to get involved

Within this project there will be lots of opportunities for patients, their families and members of the public to get involved in the research.

Discussions of the project, early planning stage (PPI = patient & public involvement)

This will take the form of 1-2 hour sessions small group discussions with brainstorming board (adults) or crafting/drawing activities (children) to help develop and improve our project.

You read our FAQs for more information.

If you are interested, you can find out more below to get in touch.

Discussions of the project, later planning stages (PPI)

We plan to have further similar sessions going forwards to progress the project once more funding has been obtained.

Anyone involved in initial discussions would be very welcome to return for these or alternatively contribute to the steering group/research itself.

Steering group

This will be set up later in the project once funding is secured to continue involving members of the public to help guide us through this project.

Research itself

For those with direct experience of paediatric bone marrow transplantation and intensive care admission, there will be the option to be involved in longer one to one interviews with our researchers.

This will form a significant part of our research and will be vital if we want to achieve our aims.

FAQs

What is PPI?

PPI stands for patient and public involvement. It is important in research to involve people and communities as well as those who access the relevant services to make sure research projects keep patients, their families and the wider community at their heart. Without your help, projects can lose focus on the aim which is always to make things better for patients and their families.

What do you need from me?

We would love you to come along and discuss our project with us, including sharing any experiences you have.

When is the next event happening?

Tuesday 9 April with 1-2 hour sessions, exact timings to be decided once participants identified but will be between 9am-4pm.

Can children and young people join in?

Yes please! We would love to hear from anyone who would like to help us, particularly children and young people as they are the people who we want to help.

Do I need to have experience of intensive care or bone marrow transplant to be involved in this research?

Absolutely not, anyone who is interested in helping us with this project is very welcome. If you do have experiences related to these areas though, this will be extremely helpful.

Will there be any compensation for my time and travel expenses?

Yes, vouchers will be available to compensate you for your time and travel expenses can be reimbursed (receipts will be required).

What if I live a long way from Newcastle and don’t want to travel?

Don’t worry, you can join us remotely and we will provide a voucher to compensate for digital costs as well.

Will there be refreshments?

Yes there will be tea, coffee, soft drinks, treats and lunch will be provided.

Where do I sign up?

You can find out details of how to sign up for the project below.

Next steps for the project

Where do we go from here?

Publication & sharing of local data

We have already presented some local data at the European Blood and Marrow Transplantation conference (April 2023)

We are hoping to present more of this data at the World Federation of Paediatric Intensive & Critical Care Societies Conference later this year (June 2024)

We have been working to publish local data on paediatric bone marrow transplant patients who go to paediatric intensive care in scientific journals and when these papers are published, links will be available here.