Transitions from Childhood Illness to Adulthood
Principles of transition care, condition-specific guidance for type 1 diabetes, congenital heart disease, epilepsy, and inflammatory bowel disease, plus the THRxEADS assessment framework.
Transition Is a Process, Not a Handover
Transition is defined as a planned, intentional sequence of events, not merely a single handover. Discussions should start between the ages of 12 and 14. A formal, written transition plan should be used. The process should gradually build self-management competencies — scheduling appointments, communicating with healthcare providers, and understanding medications.
Transition PrincipleThe focus of transition should be on the patient’s readiness, not just their chronological age. Use tools like the Transition Readiness Assessment Questionnaire (TRAQ) to measure and enhance self-management capabilities before the transfer of care.
Type 1 Diabetes
Periods of high risk involve patients being lost to follow-up, peaking around time of transfer. Address autonomy around insulin management. Contraception counselling for female patients. Routine monitoring of HbA1c and screening for neuropathy and retinopathy. Implement structured programmes such as the STEPS model.
Congenital Heart Disease
~90% of children born with CHD now survive into adulthood. Complex CHD requires continuous specialist monitoring. Transfer to adult congenital heart disease (ACHD) centres. Focus areas: contraception, exercise recommendations, endocarditis prophylaxis, employment, insurance, and pregnancy planning.
Epilepsy
Provide guidance on driving limitations and antiepileptic drug/contraceptive interactions. Be aware of teratogenic risks — valproate should not be given to girls of childbearing age unless enrolled in a pregnancy prevention plan. Common seizure triggers: sleep deprivation and alcohol.
Inflammatory Bowel Disease
Transition challenges: medication adherence, body image, relationships, academic accommodations, and nutritional support. Collaborate with adult gastroenterology. Biologic therapies may require reauthorisation under adult formularies.
Ready Steady Go / HelloThe Ready Steady Go programme (University Hospital Southampton) is a widely used structured transition resource. Includes patient-held medical summaries, clinical guidance, and sequential questionnaires — adaptable for most chronic conditions.
Chronic Illness & Disability-Specific Assessment
The THRxEADS framework provides structured sample questions to assist with transitions of chronic conditions from childhood to adulthood.
| Parameter | Sample Questions |
|---|---|
| T — Transition | What is your condition? Can you explain the important things about your condition in three or four sentences? How much of your health care is your responsibility? What do you need to do to get ready for adult health care? What kind of services will you need to find in the adult system? |
| H — Home | Are there any issues with housing and your health? (accessibility/allergens/others) Do you have concerns about how your condition affects your family’s function? Who knows about your condition? (family members/friends) If you live in more than one home, are there differences in the way you take care of your condition? |
| Rx — Medication & Treatment | What medications do you take? What are the dosages? Who is in charge of your medication? What is your role? How do your medications/treatments fit into your routine during the week/weekend? What happens when you miss a dose? What do you like and dislike about your medication? |
| E — Education & Eating | Does your condition make things different or difficult for you at school? Is there someone you can talk to or go see for help/support at school? How often do you have to miss school because of your condition? How does your condition or medications affect your diet and appetite? Does your condition affect how your body looks? |
| A — Activities & Affect | Does your condition get in the way of participating in activities that your friends do? Do you have friends or talk to people who have similar health/disability issues? Do you use the internet to connect with other adolescents who have health conditions? Does your condition affect your sleep? Does your condition make you sad, angry or anxious? Have you ever had suicidal thoughts or tried to hurt yourself because of your condition? |
| D — Drugs | What do you know about the effect of alcohol/cigarettes/street drugs on your condition or treatments? Do you ever use alcohol/cigarettes/street drugs to treat your condition, symptoms or medication side effects? |
| S — Sexuality | What do you know about the effect of your condition on your sexual health? Are there any limits on contraception you can use because of your condition? Have you talked about the genetics of your condition? (i.e., can it be passed on to your children?) |
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Yuh Good: Barbados Adolescent Health Hub @ 2026