Over eight in 10 children now survive cancer, highlighting the importance of improving the end of treatment and ensuring children live long and healthy lives after their cancer.
Led by Dr Raoul Reulen, Senior Lecturer at the University of Birmingham and Susie Aldiss, Research Fellow at the University of Surrey, the new projects will focus on what comes after active treatment. Dr Reulen aims to enable researchers to study the long-term health implications for childhood cancer survivors, and Susie’s project hopes to provide better support for patients and their families once they finish treatment.
Improving end-of-treatment support
International research has shown gaps in the information provided to families. Susie’s project, titled ‘Getting the ending right - feeling prepared to move into survivorship care when active treatment finishes’, will address this issue by looking at communication around the end of treatment in the UK.
She said:
When a child finishes treatment, it is vital that the family is given information about the child’s cancer and treatment, possible late effects, and plans for follow-up. There are many long-term side effects of cancer and treatment, families need to know what to look out for and how to get help if they need it.
In this project, the researchers will contact families and professionals to uncover which information is given, in what form, with whom, and when. They will also look at what families prefer to hear about at this emotionally charged time. For example, whether they want to hear about long-term health issues when they have just reached the end of treatment milestone.
Susie said:
Looking at what is currently happening with information at the end of treatment will help identify what is working well and what the gaps are, improving our understanding of what families need at this time. We plan for this study to lead to further work, like developing interventions or resources to improve information sharing with children and families at the end of treatment.
Addressing health risks after childhood cancer
Studies show that even after 30 years, over 70% of survivors have at least one serious health problem. Mental health problems and chronic pain are growing concerns for doctors, survivors and families.
In his project, titled ‘Creating the West Midlands Childhood Cancer Clinical Cohort’, Dr Reulen aims to understand more about these challenges. His team will study a group of nearly 4,000 people diagnosed with childhood cancer in the West Midlands since 1996. The goal is to understand how cancer types and treatments relate to later health problems, like mental health and chronic pain.
Dr Reulen will combine existing data to create a comprehensive view of treatments, cancer types, health conditions, prescriptions and mental health service usage. Together, this anonymised data will form the ‘West Midlands Childhood Cancer Clinical Cohort’. This will be a valuable new resource for childhood cancer researchers, allowing them to find ways to help patients who are at risk of health problems.
Ashley Ball-Gamble, CEO of CCLG, said:
Active treatment is just one phase of a child’s cancer journey, and the impact of cancer is lifelong for patients and their loved ones. Families have told us that understanding the long-term impact of cancer is a key concern. They also want to know there is the right information and support available, at the right times. Through these projects, we are directly addressing some of the questions that matter most to children and families and supporting care that can enable long, happy and healthy lives after cancer.