Transitioning From Pediatric to Adult Care

Moving from pediatric to adult inflammatory bowel disease (IBD) care is a planned process, not a single visit. The goal is to build independence, protect treatment continuity, and keep remission on track. A structured plan that starts in early adolescence, teaches self‑management skills, and uses a clear handoff between teams makes the move smoother and safer for teens and families. (gottransition.org)

Key takeaways

• Start planning around ages 12 to 14, and aim to complete transfer between 18 and 21, based on a structured process. (gottransition.org)

• Use readiness tools to practice skills like naming medicines, refilling prescriptions, and scheduling visits. (gottransition.org)

• Send a complete medical summary so the adult team can pick up care without gaps. (pmc.ncbi.nlm.nih.gov)

• Consider a warm handoff or joint visit to build trust and reduce information loss. (pubmed.ncbi.nlm.nih.gov)

• Only a minority of U.S. adolescents receive recommended transition planning today, so being intentional matters. (cdc.gov)

Why transition planning matters

Without a plan, young people with chronic conditions are more likely to miss medicines and appointments, use emergency care, and lose disease control. National groups recommend a stepwise approach called the Six Core Elements, which guides pediatric and adult practices to prepare, transfer, and integrate young adults into adult care. (gottransition.org)

IBD adds extra complexity, including advanced therapies, drug monitoring, and surgery history. European IBD experts advise a structured program with clear roles on both sides of the handoff. (pubmed.ncbi.nlm.nih.gov)

When to start: a simple timeline

This timeline reflects the Six Core Elements, which recommend early preparation and transfer completion by about age 18 to 21. (gottransition.org)

Core skills teens should practice

A strong transition plan teaches practical skills over time:

• Understanding the diagnosis and prior treatments, including what worked and what did not.

• Naming current medicines, doses, schedules, common side effects, and what to do if a dose is missed.

• Using the patient portal, requesting refills, and scheduling appointments.

• Knowing routine monitoring needs, such as blood work, stool calprotectin, and drug levels when relevant.

• Recognizing flare signs and red flags, and knowing who to contact after hours.

• Basics of insurance, consent, and privacy, which change at age 18 in the United States. Pediatric guidance stresses planned shifts in consent and confidentiality as part of transition. (pubmed.ncbi.nlm.nih.gov)

Validated tools, such as transition readiness assessments and IBD‑specific checklists, can help teams target teaching and track progress. (gottransition.org)

What a good handoff includes

A complete, up‑to‑date transfer package prevents delays and re‑testing. Essentials include:

• One‑page medical summary with diagnosis, location, behavior, and current status.

• Medication history, including biologics and small molecules, therapeutic drug monitoring, past loss of response, and adverse events.

• Procedure and imaging history, surgeries, and pathology highlights.

• Growth, nutrition, bone health, and vaccination records.

• Psychosocial history, mental health screening, and school or work accommodations.

• Allergies, comorbidities, and care team contacts.

Consensus publications in IBD and a modern medical summary template support these elements. (pubmed.ncbi.nlm.nih.gov)

The transfer visit and first adult year

Programs often use a warm handoff, such as a joint pediatric–adult visit or a direct case conference, to build trust and align plans. Adult gastroenterologists report that this approach improves confidence and reduces information loss. Early adult visits should revisit health goals, monitoring targets, and emergency plans, with extra attention to adherence and mental health. (consultqd.clevelandclinic.org)

At age 18, legal consent and privacy typically shift to the young adult. Families that wish to remain involved can use HIPAA releases and consider a health care proxy or durable power of attorney, consistent with clinical guidance on transition. (pubmed.ncbi.nlm.nih.gov)

Preventing treatment gaps

• Time the last pediatric and first adult appointments so there is no gap in dosing, especially for infusions or injections.

• Start prior authorizations early, and confirm the infusion site or pharmacy before transfer.

• Verify insurance changes linked to age, job, or college enrollment.

• Update vaccinations before starting or continuing immunosuppressive therapy, and review pregnancy planning and sexual health. Structured programs and checklists can improve these steps. (gottransition.org)

Special notes for IBD

IBD transition programs emphasize disease‑specific education, shared protocols for flares, and rapid re‑entry into care after flares or hospital use. Expert consensus supports multidisciplinary involvement, including nursing, pharmacy, surgery when needed, dietetics, and mental health. (pubmed.ncbi.nlm.nih.gov)

Red flags during transition

Seek urgent care plans if any of the following occur:

• Severe belly pain, persistent vomiting, or signs of obstruction

• Heavy rectal bleeding or black stools

• Fever above 101°F with worsening symptoms

• Inability to keep medicines down, missed biologic doses, or rapid weight loss

IBD teams should provide 24‑hour contact instructions and clear emergency pathways as part of the transfer plan. (pubmed.ncbi.nlm.nih.gov)

FAQs

What if someone is not ready at 18

Readiness varies. National guidance allows transfer between 18 and 21. The focus is on skills and stability, not a birthday. A temporary shared‑care period or joint visit can help. (gottransition.org)

Are joint pediatric–adult clinics required

Not required, but evidence and expert experience suggest they improve confidence and continuity when available. A warm handoff by phone or secure message is a good alternative. (consultqd.clevelandclinic.org)

Which checklists are useful

The Six Core Elements tools, NASPGHAN transition checklists, and IBD‑specific transfer summary templates are commonly used and adaptable to local clinics. (gottransition.org)