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Transition to adult care

More children with Hurler syndrome (severe MPS I, MPS I-H) are now surviving into adolescence and adulthood. This is a success of haematopoietic stem cell transplantation (HSCT), enzyme replacement therapy (ERT) and modern supportive care. It also means that teenagers and young adults need well planned transition from paediatric services to adult teams who can look after their complex, lifelong needs.

This page explains what transition to adult care means, why it matters, and how families, young people and professionals can work together to make the move as safe, smooth and empowering as possible.

What is transition to adult care

Transition is the planned process of moving from child-centred to adult-centred health care. It is not a single appointment or birthday. Good transition:

  • Starts early, usually in early teenage years
  • Happens gradually over several years
  • Involves the young person, family and both paediatric and adult teams
  • Focuses on building skills and confidence, not just transferring notes

For Hurler syndrome, this is especially important because most adults live with multisystem effects of the condition and its treatments.

By age and stage

Why transition matters in Hurler syndrome

Risks of poor transition and benefits of good planning.

Risks of poor transition

  • Miss appointments or drop out of follow up
  • Lose access to vital monitoring for heart, lungs, bones and vision
  • Struggle to manage medications, equipment and emergency information
  • Feel abandoned or anxious when familiar paediatric staff are no longer involved

Benefits of good planning

  • Reduce gaps in care and prevent avoidable complications
  • Support education, work and independence
  • Improve confidence in dealing with health professionals and making decisions
  • Help young adults plan for relationships, family life and the future

When transition should start

Exact ages vary by country and service, but a useful pattern might be:

Early teens

Around 11 to 13 years

  • Introduce the idea of future adult care in simple terms
  • Encourage the young person to join parts of the consultation
  • Start basic education about their condition and treatments
Mid teens

Around 14 to 16 years

  • Create a written transition plan
  • Begin joint clinics or joint discussions between paediatric and adult teams
  • Gradually increase the young person’s role in asking and answering questions
Late teens to early twenties

Around 16 to early 20s

  • Move to adult clinics at a pace that fits local systems and the young person’s readiness
  • Clarify who is now the lead consultant for metabolic, cardiac, respiratory and orthopaedic care
  • Review emergency plans, contact details and follow up schedule
The key message for families is that transition is a process, not a single transfer date.

What young people need to know about their condition

By the time they are moving to adult care, young people with Hurler syndrome should be supported to understand, in age appropriate language:

  • Their diagnosis (Hurler syndrome or MPS I-H) and main treatments they have had
  • Which organs are affected and which specialists they see (for example cardiology, respiratory, orthopaedics, ENT, ophthalmology)
  • Medications they take, including doses, timing, side effects and what happens if a dose is missed
  • Important precautions, such as emergency anaesthetic and airway risks
  • When and how to seek urgent help
Emergency anaesthetic information

Tools that can help

  • A personal health passport or summary booklet
  • Simple diagrams and checklists
  • Rehearsing how to explain their condition to new doctors, teachers, employers or friends

Tip: keep key documents in one place so the young person can access them (paper and digital if possible).

Skills for independent healthcare

From parent led to shared and self led.

Information

  • Keep a list of medications, allergies and key diagnoses
  • Carry an emergency card and know when to show it
  • Know when and how to seek urgent help

Practical tasks and communication

  • Book appointments or help to do so
  • Talk directly with doctors and nurses, with or without parents present
  • Manage prescriptions, equipment and repeat orders with support as needed
Parents do not have to step back overnight. The ideal is a gradual shift from adults managing everything, to shared management, to the young adult leading with backup where possible.

The role of the multidisciplinary team in transition

Because Hurler syndrome affects many organs, multiple specialists may be needed in adult care. Paediatric and adult teams should coordinate so that referrals are made before discharge from paediatric clinics, adult services understand the history of HSCT, ERT, surgeries and complications, and follow up schedules are clear and not overly fragmented.

Metabolic specialist Cardiology Respiratory / sleep Orthopaedics / spine Rehab, physio, OT ENT / audiology Ophthalmology Psychology / social work
Multidisciplinary care

Education, work and social life during transition

Linking health with future plans.

School, further education and work

  • Access arrangements for exams
  • Support at college, university or training programmes
  • Matching jobs to stamina, mobility and sensory needs
  • Workplace adjustments such as flexible hours, accessible buildings and assistive technology
Education and school

Relationships and social life

  • Friendships, dating and intimacy
  • Body image and confidence
  • How and when to talk to partners about health and genetics
  • Peer support and young adult groups where available
Living with Hurler syndrome

Medical teams can help by providing clear letters for schools, colleges and employers and by signposting to disability support services.

Genetics, fertility and family planning

As young people become adults, many will have questions about family planning. Adult services should offer referral to genetic counselling and honest discussion of fertility, pregnancy risks and available options, presented in a way that respects different cultures, beliefs and values.

  • Whether they can have children
  • The risk of passing Hurler syndrome or carrier status to their children
  • Options for genetic testing for partners and future pregnancies
Causes and genetics

Mental health and emotional aspects of transition

Transition can be emotionally challenging. Young people may feel anxious about leaving a familiar paediatric team, worried that adult doctors will not understand their history, or conflicted about wanting independence while also fearing responsibility. Families may also find it hard to let go of direct control.

Ways to support

  • Access to psychology or counselling
  • Joint appointments where paediatric and adult teams are present together for a period
  • Honest conversations about fears, expectations and boundaries
Mental health and emotional wellbeing

Transition works best when it is treated as a normal part of care, not a crisis. If feelings are acknowledged early, young people are more likely to stay engaged with adult services and to develop confidence in managing their health alongside education, work and relationships.

For families and young people: practical transition tips

  • Start talking about future adult clinics early, in simple, positive language
  • Keep a shared folder with letters, reports and care plans that the young person can access
  • Practise filling in simple forms together and making phone calls or emails to services
  • Attend part of clinic visits with the young person speaking for themselves where possible
  • Ask who will be the main contact in the adult team and how to reach them

It is normal for progress to be uneven. Some steps will go well, others may need repetition or extra support.

For healthcare professionals: building a structured pathway

  • Have a written transition policy or pathway for Hurler syndrome and related conditions
  • Identify a named transition coordinator or key worker
  • Provide age appropriate education materials on Hurler syndrome and self management
  • Run joint paediatric-adult clinics where feasible, especially at the point of transfer
  • Use clear handover letters that summarise childhood history, treatments and current issues
  • Audit transition outcomes and use feedback from young adults and families to improve services

Transition should be seen as a core clinical responsibility, not an optional extra.

Key points about transition to adult care in Hurler syndrome

  • Transition is a gradual process, not a single event, and should start in early adolescence.
  • Young people need support to understand their condition, treatments and risks and to build practical self management skills.
  • Coordinated handover between paediatric and adult multidisciplinary teams reduces gaps in care and improves safety.
  • Education, work, relationships, genetics and mental health are all important parts of transition planning.
  • Families and professionals share responsibility for making transition a supported, empowering step into adult life, not a sudden loss of care.
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