Transitional care in rheumatology is this “nurturing process” which promotes positive youth development.
Dr Janet McDonagh
This process is also known as ‘transition’ or ‘transfer of care’. You may hear any of these terms throughout this page.
Transition is the gradual process of preparing a young person to move from children’s healthcare services to adult healthcare services. It is much more than a single appointment or transfer of care—it is a journey that takes place over several years and helps young people develop the knowledge, skills, and confidence they need to manage their health as they become adults.
For young people with Juvenile Idiopathic Arthritis (JIA), transition involves learning about their condition, understanding their treatments, communicating with healthcare professionals, and becoming increasingly involved in decisions about their care.
Transition usually begins in early adolescence and continues into young adulthood. It is similar to other important life changes, such as moving from primary school to secondary school, or from school into further education, training, or employment. These transitions take time, preparation, and support, and healthcare transition is no different.
A successful transition supports not only the medical needs of young people but also their emotional wellbeing, education, career goals, relationships, and independence. Families remain an important part of this process, helping young people gradually build the confidence and skills they need to manage their health and wellbeing in adult life.
Although the terms are often used interchangeably, transition and transfer mean different things.
Transition is the ongoing process of preparing a young person for adulthood and adult healthcare services. It includes developing knowledge, skills, confidence, and independence over time.
Transfer is the specific event when a young person moves from paediatric rheumatology services to an adult rheumatology team.
There is no single “right age” for transfer. The timing will depend on several factors, including:
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- Age and maturity
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- Level of independence
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- Confidence in managing their condition
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- Whether the young person feels ready
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- Availability of appropriate adult services
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- Current health status
Where possible, transfer is often planned during a period when the young person’s JIA is stable and well controlled.
The goal of transition is to help young people develop the skills and confidence they need to successfully manage their health and wellbeing throughout adulthood.
Effective transition aims to:
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- Ensure healthcare remains coordinated, continuous, and appropriate to the young person’s age and needs
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- Support the development of communication, decision-making, and self-management skills
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- Encourage confidence and independence in managing healthcare
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- Help young people understand their condition, treatments, and healthcare needs
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- Prepare young people for adult healthcare services and adult life more broadly
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- Support parents and carers as their role evolves throughout the transition process
A successful transition helps young people feel informed, empowered, and ready to take an active role in their healthcare while knowing that support remains available when they need it.
Transition is a team effort, with the young person at the centre of the process.
A successful transition involves everyone who supports a young person with Juvenile Idiopathic Arthritis (JIA), including family members, healthcare professionals, educators, and community support services. Each person plays an important role in helping the young person develop the confidence and skills needed to manage their health and wellbeing.
People involved in transition may include:
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- The young person with JIA
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- Parents, carers, and family members
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- The paediatric and adult rheumatology teams
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- Other specialist healthcare teams, such as ophthalmology
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- The family GP
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- School, college, or university staff
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- Community health and support services
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- Charities and voluntary organisations
By working together, these individuals and services can provide coordinated support and help ensure a smooth transition from paediatric to adult healthcare.
Understanding Adolescence and JIA
Every young person is unique, with their own personality, interests, strengths, and challenges. In the same way, Juvenile Idiopathic Arthritis (JIA) affects each young person differently. Understanding the changes that occur during adolescence can help parents, carers, and healthcare professionals better support young people as they grow and develop.
Research has significantly improved our understanding of adolescent brain development in recent years. We now know that the brain continues to mature well into a person’s twenties. This helps explain why adolescence is a time of learning, exploration, increasing independence, and sometimes risk-taking as young people develop the skills they need for adult life.
Understanding how young people think, learn, and make decisions—as well as recognising the importance of their friendships, family relationships, and support networks—can help everyone communicate more effectively and provide the right support at the right time.
Just as children reach developmental milestones when learning to walk or talk, adolescence brings its own important milestones. These may include:
- Developing a sense of identity and understanding who they are
- Building relationships and friendships outside the family
- Becoming more independent from parents and carers
- Exploring future goals, interests, education, and career aspirations
At the same time, young people are navigating several major life transitions, including:
- Changes associated with puberty and physical development
- Moving from primary school to secondary school
- Progressing into further education, training, or employment
- Developing greater independence and, eventually, independent living
These are significant changes for any young person. For those living with JIA, there is an additional transition to navigate: the move from child-centred healthcare services to adult healthcare services.
Recognising these developmental milestones and life changes can help families and healthcare teams work together to support young people in building the confidence, skills, and resilience they need to manage both their health and their future.
Further Reading
For parents and carers who would like to learn more about adolescent development, the following resources may be helpful:
- The Mysterious Workings of the Adolescent Brain – TED Talk by Professor Sarah-Jayne Blakemore
- Inventing Ourselves: The Secret Life of the Teenage Brain – Sarah-Jayne Blakemore (2018)
Transition Readiness Checklists
Many rheumatology services use transition readiness checklists to help young people and their families prepare for the move to adult healthcare. These tools encourage young people to think about the knowledge, skills, and confidence they will need to manage their condition and healthcare as they become more independent.
One widely used example is the Ready Steady Go programme. The original checklist was developed from a large paediatric rheumatology research project that CCAA contributed to between 2001 and 2004. Young people with JIA and their parents from 10 paediatric rheumatology centres across the UK helped identify the issues and challenges that mattered most to them during the transition process.
Today, the Ready Steady Go programme is used across many healthcare specialties and provides practical tools to help young people gradually develop the skills needed to navigate adult healthcare services. The resources are freely available online and can be a useful starting point for conversations about transition with your healthcare team.
It’s worth remembering that transition may already have begun, even if it hasn’t been formally discussed. Encouraging a young person to understand their medications, manage appointments, speak directly with healthcare professionals, or spend some time alone during clinic visits are all important steps towards greater independence and self-management.
Has Transition Already Started?
Transition may already be happening, even if it hasn’t been formally discussed or referred to as “transition.”
Simple steps such as encouraging a young person to understand their medications, manage parts of their treatment, self-inject medication where appropriate, or speak directly with healthcare professionals during appointments are all important parts of developing independence and self-management skills.
Many rheumatology teams also encourage young people to spend some time alone with healthcare professionals during clinic visits. This provides a safe and supportive environment for them to practise asking questions, discussing concerns, and becoming more confident in managing their own healthcare.
If your child is entering adolescence, typically from around 11 years of age, it is a good idea to ask your rheumatology team about their approach to transition and when formal transition planning will begin. Ideally, transition should start early, giving young people plenty of time to develop the knowledge, skills, and confidence they need before moving to adult healthcare services.
Useful Practical Advice
Helping Your Young Person Prepare for Their Appointment
As young people grow older, developing the confidence and skills to manage their own healthcare becomes an important part of becoming more independent. This includes learning how to communicate with healthcare professionals, ask questions, discuss concerns, and take an active role in decisions about their care.
For many young people, this can feel challenging. They may know what they want to say but lack the confidence to speak up during appointments. Clinics can sometimes feel busy, unfamiliar, or intimidating, and gradually shifting responsibility from parent to young person is not always easy for anyone involved.
Developing these skills takes time and practice. Encouraging young people to become more involved in their appointments can help them build confidence, better understand their condition, and prepare for managing their healthcare as they move into adulthood.
The following suggestions may help young people, parents, and carers make the most of clinic appointments and support a successful transition to adult healthcare..
Talk through any concerns before the appointment
Set aside some time the day before the appointment to talk with your young person about how they have been feeling and whether they have any questions, concerns, or topics they would like to discuss with their healthcare team. This can help them feel more prepared and confident and ensures that important issues are not forgotten during the appointment.
Track symptoms between appointments
Encourage your young person to use a symptom-tracking tool, such as the Arthritis Tracker app, to record how they have been feeling between appointments. Having a summary of symptoms, medication effects, pain levels, fatigue, or flare-ups can help healthcare professionals better understand their experiences and make informed decisions about their care.
Make a list of questions together
Before the appointment, write down a list of questions and concerns from both you and your young person. Having notes to refer to can make it easier to remember important topics during the consultation, particularly if your young person will be spending part of the appointment speaking with the healthcare professional independently.
Consider your own questions too
As young people become more involved in managing their healthcare, parents and carers may also appreciate opportunities to discuss concerns separately. If your young person will be seen alone for part of the appointment, think about any questions or issues you may wish to raise with another member of the healthcare team.
Agree on your roles during the appointment
Discuss beforehand how you and your young person would like to share the conversation during the clinic visit. For example, your young person might ask certain questions while you raise others. If they are just beginning to take a more active role in appointments, encourage them to choose one or two questions they feel comfortable asking themselves. Developing communication skills in a supportive healthcare setting can help build confidence for the future.
Encourage increasing independence at their own pace
Spending some time alone with a healthcare professional can help young people develop confidence and independence in managing their health. However, this should happen when they feel ready. Many young people prefer to begin by asking questions with a parent or carer present before progressing to independent conversations. Building a trusting relationship with the healthcare team, and seeing familiar professionals where possible, can help make this transition easier.
Building Independence, One Step at a Time
Transition is not about expecting young people to manage everything on their own overnight. It is a gradual process of learning, practising, and gaining confidence, with support from family, friends, healthcare professionals, and the wider community.
Every young person’s journey will be different. Some will be ready to take on more responsibility earlier than others, while some may need additional support along the way. What matters most is creating opportunities for young people to build the knowledge, skills, and confidence they need at a pace that feels right for them.
By working together, families and healthcare teams can help young people with JIA develop the independence and self-management skills that will support them throughout adulthood.
Tips for Managing Medications
Taking medication is an important part of managing JIA, but remembering to take medicines regularly can be challenging for people of all ages. Developing good habits and routines can help young people become more confident and independent in managing their treatment.
Learning to take responsibility for medications is often a gradual process. If you’re concerned about your young person forgetting, consider encouraging them to take charge of one medication at a time and gradually build their confidence. It’s important to remember that everyone forgets occasionally—even adults.
An important part of managing medications independently is understanding what each medicine is for, how it works, how and when it should be taken, and any possible side effects. Encouraging your young person to ask questions and learn about their treatments can help them feel more informed, confident, and involved in their own healthcare.
The following tips may help young people develop routines and strategies to remember their medications more consistently..
Ways to Remember Your Medication
Finding a routine that works for you can make it easier to remember to take your medication regularly. Here are some practical tips that may help:
- Set reminders on your phone, smartwatch, or another device you use regularly.
- Use a medication reminder app to track doses and receive alerts.
- Place a reminder note or sticker somewhere you will see it every day, such as on a mirror or bedroom door.
- Link taking your medication to an existing daily habit, such as brushing your teeth, eating breakfast, or getting ready for bed.
- Carry a water bottle with you so you can take your medication when you’re away from home.
- Use a pill organiser (dosette box) to help keep track of your medication and make it easier to take when you’re out and about.
- Plan ahead and make sure you have enough medication, particularly before holidays, weekends, or busy periods.
- Be involved in ordering your own repeat prescriptions and collecting medications when appropriate.
- Build a positive relationship with your rheumatology team, GP, nurse specialist, and pharmacist, and encourage your young person to ask questions if they are unsure about any aspect of their treatment.
If your young person is finding it difficult to take their medication, or has concerns about side effects, encourage them to speak with their healthcare team. They may be able to offer reassurance, practical solutions, or discuss alternative treatment options if needed.
Further resources/websites
MyTransition App (Canada)
The app includes tools to help young people describe their health condition, raise important health needs in new situations, and measure skills related to managing their own health.
We are hugely grateful for the time and expertise generously given by the late Dr Janet McDonagh in contributing to this information and advice for families.