Transition to Adult Care
Why Transition Matters
Pituitary disorders diagnosed during childhood frequently require lifelong specialist endocrine care.
These may include:
- Hypopituitarism
- Craniopharyngioma
- Growth Hormone Deficiency
- Adrenal Insufficiency
- Arginine Vasopressin Deficiency (AVP-D)
- Pituitary tumours
- Other complex endocrine conditions
Without effective transition planning, young people may experience interruptions in medical care, missed appointments, reduced treatment adherence, poorer health outcomes, and increased emotional stress.
Research consistently shows that structured transition programmes improve continuity of care, support better long-term health outcomes, and help young adults become active partners in managing their own condition.
What is Transition?
Transition is a gradual, planned process, rather than a single event.
International best practice recommends that discussions about transition begin early, often from around 11–12 years of age, allowing plenty of time for young people to prepare before transferring to adult endocrine services, usually between 16 and 19 years of age, depending on individual circumstances and local healthcare services.
Throughout this process, healthcare professionals gradually encourage young people to become more involved in their own healthcare by helping them to:
- Understand their diagnosis
- Learn about their hormone replacement medications
- Recognise when emergency treatment is required
- Speak confidently with healthcare professionals
- Attend appointments independently when appropriate
- Manage prescriptions and medications
- Develop confidence in making informed healthcare decisions
The pace of transition should always be individualised to meet the needs of each young person.
Transition Clinics
Many specialist endocrine centres provide joint transition clinics, where paediatric and adult endocrinology teams work together during the transfer of care.
These clinics help ensure:
- continuity of care
- introduction to the adult healthcare team
- shared medical information
- ongoing support for both the young person and their family
- opportunities to ask questions before fully transferring to adult services.
A gradual transition helps reduce anxiety while building confidence and independence.
Challenges During Transition
Transition often occurs during an important stage of life.
Young people may also be:
- preparing for Junior or Leaving Certificate examinations
- moving to college or university
- beginning employment
- learning to drive
- becoming more independent from parents
- developing new friendships and relationships
- considering future family planning
Managing a lifelong endocrine condition alongside these major life events can sometimes feel overwhelming.
Parents and carers also experience their own transition as they gradually hand over responsibility for healthcare management while continuing to provide important emotional support.
Building Independence
One of the main goals of transition is helping young people become confident in managing their own healthcare.
This includes understanding:
- their diagnosis
- why lifelong hormone replacement therapy is needed
- when medications should be taken
- recognising symptoms of hormone deficiency
- adrenal crisis prevention and emergency management (where applicable)
- the importance of carrying emergency medical information
- arranging repeat prescriptions
- attending appointments
- asking questions and advocating for themselves.
Developing these skills early helps prepare young people for adult healthcare services and everyday life.
Emotional Wellbeing
Transition is about much more than medical care.
Many young people experience anxiety about leaving familiar paediatric healthcare teams and adjusting to adult hospital services.
Open communication, emotional support, peer support, and access to reliable information can make this process much easier.
Healthcare professionals, families, schools, patient organisations and support networks all play an important role in helping young people feel supported throughout their transition journey.
Transition in Ireland
In Ireland, transition pathways continue to develop across paediatric and adult healthcare services.
Although transition services may vary between hospitals and specialties, there are excellent national resources available to support young people and families.
Stepping Up Ireland
Stepping Up is Ireland's national transition programme designed to help young people with long-term health conditions prepare for adult healthcare.
The website provides:
- practical guidance
- videos and educational resources
- self-management tools
- information for young people
- resources for parents and carers
- guidance for healthcare professionals.
The aim is to empower young people to become confident, informed and independent as they move into adult healthcare services.
Children in Hospital Ireland
Children in Hospital Ireland supports children, young people and families using healthcare services throughout Ireland.
The organisation provides information, advocacy and resources to help improve the healthcare experience for children and young people, including those living with long-term medical conditions.
Resources for Young People Living with Pituitary Conditions
The Pituitary Foundation (UK) provides excellent educational resources specifically developed for children, teenagers and young adults living with pituitary disorders.
These include downloadable information covering:
- Living with Hypopituitarism
- Growing Up with Pituitary Conditions
- Preparing for Adult Healthcare
- Information for Parents and Families
These resources help young people better understand their condition while supporting greater independence and confidence.
International Guidance
Transition from paediatric to adult endocrine care has become an important area of international research.
The European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) have jointly developed evidence-based clinical guidance outlining best practice recommendations for healthcare professionals supporting young people throughout transition.
These recommendations emphasise:
- early planning
- personalised transition programmes
- multidisciplinary care
- shared decision-making
- psychological support
- continuous endocrine follow-up throughout adulthood
WAPO Educational Webinar
The Worldwide Adrenal and Pituitary Organizations (WAPO) has also recognised the importance of transition by hosting an international educational webinar dedicated to this topic.
The webinar features leading endocrine specialists discussing:
- why transition matters
- challenges faced by young people
- practical strategies for successful transition
- international examples of best practice
- improving continuity of care for people living with pituitary and adrenal conditions.
This webinar is freely available and may be valuable for young people, families and healthcare professionals.
Pituitary Ireland's Commitment
As a newly established patient support and advocacy organisation, Pituitary Ireland does not currently provide a dedicated transition support programme or specialist transition clinics.
However, we recognise that this is an important area for young people living with pituitary and adrenal conditions.
We are committed to raising awareness of the challenges associated with transition, signposting individuals and families to trusted information, promoting best practice, and working collaboratively with healthcare professionals, patient organisations and international partners to improve transition services for people living with pituitary gland disorders in Ireland.
Our goal is to ensure that every young person living with a pituitary condition feels informed, supported and empowered as they move from paediatric to adult healthcare services.