Pathways to Improving Transition to Adult Services & Enhancing Self-Management in Adolescents with Cystic Fibrosis: A New Era of Treatments

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 & selfmanagement ’ 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.

Award Date
01 July 2022
Award Value
Principal Investigator
Dr Caroline Heary
Host Institution
National University of Ireland, Galway
HRCI-HRB Joint Funding Scheme