Pathways to Improving Transition to Adult Services & Enhancing Self-Management in Adolescents with Cystic Fibrosis: A New Era of Treatments
Cystic Fibrosis Ireland are delighted to be supporting Dr Caroline Heary and her research which seeks to support adolescents with Cystic Fibrosis (CF) to successfully manage their health, as they prepare for their transition to adult services.
Dr Heary’s project was successfully awarded funding through the HRCI/HRB Joint Funding scheme. The expertise of young people with CF play a central role throughout this research, both as advisors and participants in the research. Thanks to Health Research Charities Ireland and the Health Research Board for running this hugely important, patient-centred scheme.
“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
“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
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. 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. Consequently, young people may face a future that requires less inpatient care, more outpatient support and greater reliance on self-management. How young people adapt to these changed circumstances remains unclear.
Our research programme focuses on two key areas: ‘’Taking responsibility & self & management ’ and ‘Transition to adult services’. Our research aims to:
- Explore the experiences of young people on Kaftrio (impact on self-care; identity and view of the future).
- We will interview teenagers and their parents from a paediatric service and an adult service
- Identify ways of supporting young people
- Based on the above interviews, we will identify the support needs of young people in terms of management of their health and preparing 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. We will collaborate with a youth advisory panel to guide the design and content of this work.
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