The teenage years are a time of change. Being an adolescent with Cystic Fibrosis (CF) can bring additional challenges due to complex and demanding treatments. A key task for teenagers with CF is to learn the skills to manage their health, as they prepare to transition into adult-based care. The term “transition” describes the process of planning, preparing and moving from children’s health services to adult healthcare.
It is a gradual process of change which aims to achieve the best outcomes possible for people with CF in the areas of health, independence and adulthood.
In Ireland, many adolescents transition to adult services at age 17. The transition to self-care can often result in reduced adherence to treatments, which can affect health outcomes.
The availability of new modulator drugs has substantially improved clinical outcomes in CF. Consequently, young people may face a future that requires less inpatient care, more outpatient support and greater reliance on managing their CF independently. The question of how well young people will adapt to these changing circumstances is of real interest to researchers.
Health Research Charities Ireland (HRCI) is the national umbrella organisation for charities active in health research in Ireland. Together with the Health Research Board (HRB), HRCI administers the HRCI/HRB Joint Funding Scheme, an innovative, invaluable research funding scheme through which charities co-fund internationally competitive, impactful patient-focused research for their members.
In 2022, Dr Caroline Heary, Senior Lecturer, Department of Psychology University of Galway and a team of clinical staff and researchers, submitted an application to the Joint Funding Scheme titled: “Pathways to Improving Transition to Adult services & Enhancing Self-Management in Adolescents with Cystic Fibrosis: A New Era of Treatments”.
This research seeks to support adolescents with CF to successfully manage their health, as they prepare to transition to adult services. Dr Heary and team were successful in the scheme and Cystic Fibrosis Ireland and the Health Research Board will co-fund this project over the next few years.
Taking responsibility & self-management' and 'Transition to adult services' Research Aims Dr Heary’s research programme focuses on two key areas: ‘’Taking responsibility & self-management’ and ‘Transition to adult services’.
The research aims to:
- Explore the experiences of young people on Kaftrio (investigating the impact of the therapy on self-care; identity and view of the future).
- Identify ways of supporting young people as they manage their health and prepare to move to adult services
- Conduct a nationwide survey of teenagers with CF to identify what factors are associated with transition readiness.
- Adapt an international peer mentoring programme called iPeer2Peer so that it is suitable for teenagers with CF. This online programme connects teenagers with young adults who have lived experience of CF, to mentor and support teenagers as they prepare to move to adult services.
This programme of research seeks to improve the quality of young people’s lives. The voice of young people with CF has been central to this project. In developing their research application Dr Heary and team consulted with a youth advisory group from Cystic Fibrosis Ireland to hear their view of the research question and proposed project. The team took on board the preferences of this advisory panel and amended the project plan. The advisory group stated a preference for a peer mentoring element to the work and this was added following the consultation. The team will continue to collaborate with a youth advisory panel throughout the lifecycle of this project to ensure it continues to meet their needs.
“The aim of this programme of research is to learn more about how we can support adolescents living with CF to successfully manage their health, as they transition to adult services. New treatment options have changed the clinical landscape for many young people living with CF. This research provides us with the opportunity to engage with & learn from young people living with CF with a view to identifying optimal supports for young people during key transitions.”
Dr Caroline Heary, Principle Investigator
CF Ireland are excited at the prospects of this research programme. Researchers hope to develop evidence-based approaches to support young people at critical junctures in their youth: namely self-management during the adolescent years and transition to adult services. The ultimate goal is to identify the best ways that young people can be supported in their transition to self-management of their CF in adulthood.
“The transition to adult services can be a challenging experience for young people with CF. CFI is delighted to support Dr Caroline Heary and her research to identify ways in which this transition can be made as manageable as possible, drawing from the direct experience of young people with CF. We further know the outcomes of this research will be of wider interest to people living with other long term, non-CF, conditions who can face similar challenges to transition.” Philip Watt CEO CFI
Cystic Fibrosis Ireland will bring you regular updates on this project over the coming years, the research is due to begin in November 2022. For more information, please visit www.cfireland.ie
