Transition of children with inflammatory bowel disease: Big task, little evidence

Table 1 Checklist of tasks for the patients and the medical team based on chronological age as suggested by Hait et al[8]

Age	Patient	Medical team
11-13	Able to articulate his or her GI condition	Introduces idea of future independent visits
	Able to name medications, doses, side effects	Asks parents to remain in waiting room for a portion of the visit
	Knows strategies to take his or her medications	Anticipatory guidance about fitness, sexuality, and substance abuse
	Able to use and read a thermometer
	Articulates impact of IBD on school and daily life
14-16	Able to identify medical team	Directs all questions and explanations to patient
	Knows names and purposes of procedures and tests done on him or her	Patient ask for input first
	Knows his or her medical history	Explores family’s apprehensions about patient taking in primary role
	Knows names of IBD social support groups and community organizations	Clarifies to patient what must legally be disclosed to parents
	Understands the medical risk of no adherence	Determines when the patients wants his or her parents in and out of the room
	Understands the impact of drugs and alcohol on the illness	Initiates discussion about eventual transfer of care
		Determines post-high school plans (social, employment, education)
		Instructs patient to keep names of medications, dosages, and medical team contact in wallet/purse/backpack
		Instructs patient on how to get prescriptions filled and how to call and schedule appointments
17-19	Knows how to gather information about IBD	Initiates conversation about potential barriers to transition
	Demonstrates consistent ability to book own appointments, fill prescriptions, contact medical team	Identifies potential adult GI providers
	Able to name his or her insurance coverage and plans for next 2 years of coverage	Encourages patient to meet and interview providers
	Carries insurance information in wallet/purse/backpack	Reminds patient and family that at age 18 the patient has the right to make his or her own heath choices
20-23	Has had a telephone conversation with potential adult GI providers	Providers patient with medical summary and checklist (see Table 2)
	Initial visit with adult GI is scheduled while IBD stable	Transfers medical records to adult provider

IBD: Inflammatory bowel disease; GI: Gastrointestinal.

Table 2 Clinical transition framework[9]

	Early (10 to 12 years of age)	Middle (13 to 15 years of age)	Late (16 to 18 years of age)
Self-advocacy	Describe GI condition	Name and describe the role of those involved in care	Review successful changes achieved in life
	Learn about transition process	Learn about rights and responsibilities	Review GI conditions and ways to stay informed
Independent behaviors	Name medications and doses	Describe tests and reasons for them	Demonstrate knowledge in dealing with own care needs (e.g. booking appointments, refilling prescriptions)
	Choose method to remember to take medication	Plan and prepare for appointments
		Discuss differences in pediatric and adult care
		Encourage self-reporting
Sexual health	Discuss puberty and changes related to GI condition and medication side effects	Discuss safer relationships and dating	Aware of sexual capability and ability to have children
		Name places for reliable sexual health information	Understands sexual behaviors and its risks
Social supports	Describe role of family in transition process	Discuss family medical history	Enrolls in GI support associations
		Discuss ways to benefit from peer support	Identifies contacts in case of need of emotional support
Educational/ vocational planning	Discuss school attendance, goals and strengths	Review restrictions for education or work	Aware of work opportunities
		Discuss volunteering opportunities at school or community	Discuss further plans for insurance coverage
Health and lifestyles	Review healthy active living	Review ways of coping with stress	Describes exercise/activity routines
	Tobacco use or other substances	Learn of risks associated with driving and GI condition	Discuss importance of planning ahead for trips and being away from home

Adapted from the ON-TRAC abo model at the British Columbia Children’s and women’ Health Center.