The World Health Organisation defines adolescence as the period between 10-19 years.  This is a time of change, both developmental and educational. Being an adolescent living with Cystic Fibrosis (CF) brings additional challenges due to complex and demanding treatment.  Since the introduction of the new triple combination CFTR modulator therapies, the CF-clinical landscape is also changing. For some, there remains a requirement for in-patient care, for others there is a reliance on outpatient support and self-management. How young people are adapting to these changes is an important area to consider.  

As children transition into adolescence, their healthcare and support needs also change.  In Ireland, many adolescents transition to adult care aged 16-18 years. For young people and their families, this is a much more than a logistic challenge.  This is a move from a familiar environment and trusted clinical team to an unfamiliar environment and clinical team.  To make this move less daunting, the topic of healthcare transition should be discussed from at least early adolescence.  A key task is to learn the skills needed to manage their health as they prepare to move to adult services. Fostering independence and self-management skills in these early years can help young people negotiate the various challenges that arise as they get older and move to an adult service. Keeping on top of the advice and recommendations of their health care team can be a challenge for many young people as this busy stage of their lives. Keeping up with friends, college and work are important to many. Understanding the needs of young people at this time is important as we move into a new era of treatments.

Pathways led by Dr Caroline Heary and Dr Angeline Traynor at the University of Galway, is a programme of research that includes three very different studies with a common goal, to explore and identify how to best support young people living with CF as they learn to manage their health and prepare to transition to adult care.  Pathways is funded by the HRCI/HRB Joint Funding Scheme 2022 in partnership with CF Ireland.  Collaborators include clinical and research teams from Children’s Health Ireland, St Vincents University Hospital, Sick Kids Children’s Hospital in Toronto, and the University of Galway.  This research has two key areas of focus: the development of self-management skills and transition to adult care.   

Pathways Interview Study
The Pathways programme began with ainterview study that is ongoing in three paediatric sites and one adult site in Ireland.  This work seeks to understand the needs and experiences of young people in this new era of treatment regardless of their treatment plan.  Young people from paediatric and adult sites in Dublin  and their parents  take part in one-to-one interviews to share their experiences.  In sharing their journey and what they have learned over time, they are also identifying supports that may be used to prepare for the future in what is a very changed clinical landscape.
While this study is ongoing, the response has been overwhelming positive from all who have generously given their time and experience.  The overall findings from this research will be shared with research and clinical collaborators including Children’s Health Ireland and St Vincents University Hospital who have supported this work and are eager to give voice the patients and families they work with.    

Pathways Survey Study – www.pathwaysresearchstudy.com 
Building on this work, the Pathways Survey was launched in the Summer of 2024.  This is a nationwide, online, anonymous survey designed to overcome geographic barriers by capturing the supports needs of young people living with CF from across Ireland. Some find the move to greater independence and the move to adult services harder than others. Understanding these differences can help us make recommendations on the different needs young people might have.  It is important to understand what are the barriers that now need to be addressed and are there additional or differing supports needed as young people move into adulthood and prepare for the future. The Pathways Survey is nationwide and open to young people aged 13-25 years living with CF. If you would like to know more about this, visit or scan below. 

Peer Mentor Training
The Pathways programme of research concludes with Peer Mentor Training.  This study will focus on a frequently voiced need for peer-to-peer support. Young people and parents have identified a desire to be able to connect with peers who have more experience of health management or healthcare transition.  In response, the Pathways team are in the early stages of a peer mentor training programme where adolescents aged 13-16 years, living with CF may be paired with peer mentors aged 18-25 years living with CF, who have learned to manage their health and have experience of moving to adult care. Mentors will share their experience and offer support to young people preparing to move to adult care.  Mentor training will be provided in early 2025.  This training programme will be a first step toward the development of peer support resource where an adolescent preparing to move to adult care can avail of social support provided by young people with similar lived experience and whom they can relate.  If you would like to know more about this, visit or scan below. 

Youth Advisory Panel
The Pathways programme of research has engaged with a youth advisory panel from the outset.  This is a group of young people aged 16-25 years, living with CF, who offer guidance and feedback in every phase of research activity.  The Pathways Youth Advisory Panel continue to guide the research team in the design of research materials, study recruitment and knowledge translation.  The progress made to date could not have been achieved without the fantastic Pathways participants, our Youth Advisory Panel, our collaborators and our research teams.   For this we would like to extend our sincere gratitude to everyone who has been involved up to this point and who continue in their support, helping ensure we address the issues that are most important young people living with CF and their families.  If you would like to know more about this, visit or scan below. 

The Pathways team are supported by collaborators from Children’s Health Ireland at Crumlin, Temple Street and Tallaght University Hospital and at St Vincent University Hospital, the University of Galway and SICK Kids Children’s Hospital, Toronto