Children’s Cancer and Leukaemia Group (CCLG) has partnered with Young Lives vs Cancer to fund a new research project that will assess the benefits and challenges of administering chemotherapy at home to children with cancer.
The goal of this jointly funded project is to understand more about which hospitals are providing chemotherapy in an ambulatory (home) setting, how it’s done and what works.
Titled, ‘The PACS study: Understanding ambulatory care service provision within the UK’, the project is led by Dr Jess Morgan, Trust Doctor in paediatric oncology at Leeds Children's Hospital, and Dr Gemma Bryan, Research Fellow at the University of Surrey.
Dr Morgan said:
Ambulatory care is essentially chemotherapy in a backpack. At the moment, lots of children stay in hospital to have their chemotherapy and are hooked up to a pump for days at a time. In some other age groups, hospitals can give patients a pump in a backpack, and they’re able to go home or somewhere else nearby.
We think that this might provide some benefits like improved patient experience, time away from the hospital, and independence. But we also think there might be some challenges and so that’s what we want to explore in the PACS study.
Dr Morgan and Dr Bryan will be talking to both the public and healthcare professionals in this project. They plan to invite all of the UK’s principal treatment centres for childhood cancer to take part in interviews, and will select centres to visit as case studies. At the centres, the research team will interview patients and caregivers to understand more about their experience of chemotherapy.
Dr Morgan added: “There will be two ways that patients and families can be involved in this project. The first one is as participants in interviews to understand their experiences of ambulatory care. It isn’t just parents either – we would like to talk to anyone who has looked after a child during chemotherapy, whether it was in hospital or receiving ambulatory chemotherapy.
“The second is through patient and public involvement work, where we are currently looking for caregivers and patients to help us decide how best to develop the research to get the answers that we need.”
The team hope to develop information resources that will help hospitals design or improve their ambulatory care service. Their analysis will explore various factors influencing service design, such as shared care networks, patient numbers and geography, while also identifying areas of excellence, addressing challenges, and engaging all stakeholders.
Ashley Ball-Gamble, Chief Executive of CCLG, said:
We are passionate about improving the experience of treatment for children with cancer and their families. Ambulatory care is an emerging area, and our newly-formed ambulatory care working group comprises professional members with an interest in this field. They're keen to understand the best ways of developing and delivering ambulatory care services, and this research project will provide a solid foundation for future improvements.
Tracy Cosgrave, Associate Director of Young Lives vs Cancer, said:
We are pleased to support this research. Ambulatory care is increasingly becoming a way for children and young people with cancer to receive their treatment and can allow young people and their families to avoid long hospital stays. This means they can spend more time at home, helping them to feel more comfortable and minimise the costs of travel, too.
I am confident that the research will support best clinical practice and help determine what is best for young cancer patients and their families. Making sure children and young people with cancer get the best care and support is always our priority and we believe this will enable them to receive this vital treatment in a more flexible and comfortable way.
To join the Patient and Public Involvement group for the PACS study, please email Dr Morgan or Dr Bryan.