Transitioning From Pediatric to Adult Care

Transition from pediatric to adult IBD care is a gradual process where responsibility shifts from parents and pediatric teams to the young adult and an adult gastroenterology team. Thoughtful planning helps maintain disease control, prevent gaps in medication, and support growing independence. This article explains when transition typically begins, which skills matter most, and practical steps that teens, families, and clinicians can take together to keep care connected and safe. (worldgastroenterology.org)

Key Takeaways

• Transition is a multi‑year process, not a single clinic visit.

• Planning usually begins in early to middle adolescence while the pediatric team is still involved. (worldgastroenterology.org)

• Core skills include understanding the diagnosis, medications, tests, and knowing when to seek urgent care. (academic.oup.com)

• Written handover, joint planning, and clear medication plans reduce gaps in treatment during transfer. (worldgastroenterology.org)

• Parents and caregivers gradually move from “manager” to “coach,” while staying part of the support system. (academic.oup.com)

• Mental health, school, work, and insurance changes should be part of transition conversations, not afterthoughts. (ecco-ibd.eu)

Why Transition Planning Matters in IBD

Adolescents and young adults with IBD face a higher risk of missed medications, emergency visits, and mental health challenges compared with older adults. This group often has more severe disease and complex treatment plans, so a break in care can lead to flares or complications. (worldgastroenterology.org)

Structured transition programs focus on maintaining continuous care while shifting responsibility from caregivers to the young adult. Research and expert guidelines highlight six core elements: clear policies, tracking, readiness assessment, planning, transfer, and follow‑up in adult care. Programs that address these elements tend to improve adherence, clinic attendance, and satisfaction. (academic.oup.com)

When Transition Usually Starts and Who Is Involved

Guidelines recommend starting transition preparation in early to middle adolescence, often around the early teen years, even though the actual transfer to adult care usually happens in the late teens or early twenties. Early conversations give time to build skills gradually and reduce stress about change. (worldgastroenterology.org)

Typical members of the transition team include:

• Pediatric gastroenterologist and IBD nurse

• Adult gastroenterologist with an interest in young adults

• Primary care clinician

• IBD dietitian and pharmacist

• Mental health professionals and social workers when needed

Some centers also use a transition coordinator, who helps track readiness, organize records, and schedule joint visits between pediatric and adult teams. (academic.oup.com)

Core Skills for Independent IBD Care

Understanding the Condition and Treatments

By the time transfer happens, most teens are encouraged to:

• Name the specific diagnosis and any surgeries or procedures

• Describe typical flare symptoms and past severe episodes

• List current medications, doses, and timing

• Understand why each medication is used and basic side effects

Many programs use checklists or “passports” that summarize diagnoses, surgeries, medications, and allergies in one portable document or app. These tools help the young adult share accurate information in emergency rooms, new clinics, or at school. (worldgastroenterology.org)

Daily Management Tasks

Gradually, day‑to‑day tasks shift from caregivers to the teen. Common goals include:

• Using reminders, pill organizers, or apps to take medicines on time

• Calling the pharmacy for refills and checking remaining supplies

• Knowing when blood tests, stool tests, or infusions are due

• Bringing a medication list to every appointment

• Using a symptom diary or digital tracker to record pain, stools, bleeding, and fatigue

During this stage, caregivers often still supervise in the background but let the teen make the initial calls or requests.

Communication and Safety Skills

Adult clinics usually expect the young adult to speak directly with clinicians. Practice can start in pediatric visits where the clinician talks with the teen alone for part of the visit, then invites caregivers back in. (worldgastroenterology.org)

Important communication and safety skills include:

• Clearly describing symptoms, including bowel habits and pain

• Asking questions about test results and treatment options

• Knowing which symptoms are “red flags” that need urgent contact or emergency care

• Knowing how to reach the IBD team during and after office hours

Practical Steps Before Transfer

A few concrete steps can make the actual switch to adult care smoother.

1. Create a Written Medical Summary

A medical summary is usually prepared by the pediatric team, often with input from the family and teen. It typically includes:

• Diagnosis, age at diagnosis, and disease location

• Surgeries, hospitalizations, and major flares

• Past and current medications, including any side effects or failures

• Allergies, vaccination history, and key test results

Guidelines strongly recommend a written handover so the adult team has a clear history from the first visit. (academic.oup.com)

2. Choose and Meet the Adult IBD Team

When possible, pediatric and adult gastroenterologists arrange at least one joint or “handover” clinic visit. This visit lets the young adult meet the new team while the familiar pediatric clinician is present, which can build trust and reduce anxiety. (worldgastroenterology.org)

If a joint visit is not available, a separate introduction visit can still help. Families can ask whether the adult clinician has experience with IBD in young adults and whether there is access to IBD nursing, dietitians, and mental health support.

3. Plan Timing and Medication Logistics

The timing of transfer is often flexible. Many teams avoid moving care during exam seasons, just after surgery, or during a severe flare, unless there is no alternative.

Before the first adult visit, it helps to:

• Confirm that insurance covers the new clinic and hospital

• Check that infusion centers, specialty pharmacies, or home delivery services are organized

• Make sure there are enough medications and refills to bridge the transition period

4. Practice Independent Visits

In the year or two before transfer, clinic visits often shift so the teen:

• Checks in at the front desk independently

• Brings and updates the medication list

• Speaks first during the visit, with caregivers adding details later

This approach reflects a key transition goal: the young adult becomes the main contact for the health care team, with caregivers staying involved as invited supporters. (academic.oup.com)

Role of Parents and Caregivers

For many families, the emotional side of stepping back is as challenging as the medical tasks. Pediatric guidelines encourage caregivers to move from doing tasks “for” the child to doing them “with” the teen, then into a coaching role as skills grow. (worldgastroenterology.org)

Practical ideas include:

• Letting the teen call the clinic or pharmacy, with a caregiver nearby for backup

• Asking the teen to keep a copy of the medical summary and insurance card

• Encouraging the teen to lead school or college accommodation meetings when possible

Some young people have developmental or cognitive conditions that limit full independence. In those situations, shared decision making, supported decision making, or formal guardianship might be needed, usually with legal and social work guidance.

Mental Health, School, and Life Transitions

Adolescence with IBD can involve anxiety, low mood, body image concerns, and worries about the future. Nonadherence to treatment is particularly common in this age group, and emotional distress often plays a role. (ecco-ibd.eu)

Because of this, transition programs increasingly include routine mental health screening and easy access to counseling, social work, and peer support. (academic.oup.com)

School and work need attention as well. Helpful steps include:

• Planning for bathroom access and flexible attendance policies

• Arranging exam or assignment adjustments during flares

• Coordinating infusion schedules with class or work hours

• Discussing disclosure at school or work and who needs to know

For students moving away to college or vocational training, the team often helps locate adult IBD services near the new location and clarifies how to access urgent care.

The First Year in Adult Care

The first year in adult care can feel different. Visits may be shorter and more focused on the young adult’s own goals and choices. Adult teams still follow treat‑to‑target strategies, aiming for symptom control and healing of inflammation, but expect the patient to take the lead in communication. (pubmed.ncbi.nlm.nih.gov)

Regular follow‑up, strong communication, and a clear plan for flares are key during this period. Many centers track whether new adult patients attend scheduled visits and stay on therapy, then adjust support if gaps appear. Families and clinicians who treat transition as a shared, long‑term project, not a single handoff, give teens with IBD the best chance for stable health and growing independence. (academic.oup.com)

FAQs

When is a teenager “ready” to move to adult IBD care?

Readiness is less about age and more about skills. Signs of readiness include understanding the diagnosis and medications, handling most daily management tasks, and being able to speak directly with clinicians about symptoms and concerns. Many clinics use transition checklists or readiness questionnaires to guide this decision. (worldgastroenterology.org)

What if a teen is anxious or strongly attached to the pediatric team?

Anxiety about leaving a trusted team is very common. Joint visits, gradual increases in teen responsibility, and early introduction to the adult clinician can help. Mental health support is important when fear of change affects sleep, mood, or willingness to attend appointments. (ecco-ibd.eu)

How can transition work during the first year of college or a move?

Planning usually starts months before the move. The team often helps identify an adult IBD clinic near the new home, transfer records, and align infusion or medication schedules. A written flare plan and clear instructions on where to go for urgent care are especially important during this time. (academic.oup.com)

What if there is no nearby adult gastroenterologist who specializes in IBD?

In many regions, adult IBD experts are located in larger centers. Pediatric teams may refer to the closest adult gastroenterologist and arrange shared care with a primary care clinician. Telehealth, where available, can sometimes connect patients with distant IBD specialists while routine labs and imaging happen locally. (academic.oup.com)