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Health‐care engagement by age—individualized consideration should be made for developmentally‐appropriate expectations based on cognitive and social–emotional functioning |
| Early adolescence (12–14) |
Learning to describe specifics of their liver disease Learning about the importance of medical adherence Can name medications, dosing, schedule & side effects
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Learning healthy lifestyle choices (e.g., food, exercise, sleep, peer influence) Can articulate their needs in school and other environments (e.g., sports)
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| Mid adolescence (14–17) |
Demonstrates knowledge of medical history and answers disease‐related questions during visits Developing independent medication management (i.e., dosing, schedule) Know names and purposes of necessary labs and tests Understands the risk of medical non‐adherence Learning about filling prescriptions
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Increasing one‐on‐one time with provider during visits Scheduling medical visits, communicating with medical team (e.g., phone calls, EMR messages) Knows names and roles of medical providers; knows how to contact medical team Learning about insurance and medical bills
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Understands the impact of drugs and alcohol on liver condition Advocates for their needs and accommodations in school and other activities (e.g., school, sports) Discussing fertility/ sexuality with medical providers
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| Late adolescence (17+) |
Knows their medical history and answers disease‐related questions Independent medication management (i.e., dosing, schedule) Can identify contraindicated medications Arranges and follows through with necessary labs and tests Arranges for prescriptions and refills Receives medical summary and makes arrangements for an adult gastroenterologist
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Independent clinic visits with provider (without parents) Demonstrates understanding of insurance coverage and paying medical bills; who to contact with questions Communicating with medical team; scheduling visits
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Planning for after high school (i.e., college, work) and knows how to access resources (e.g., FMLA) and accommodations (e.g., college disability services) Discusses with provider lifestyle choices, impact of drugs and alcohol on liver condition
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| Role of Medical Provider/Team |
Ongoing assessment of transition readiness and Focus attention on the patient rather than the guardian when providing any explanations Engage youth and parents/caregivers in setting specific goals (e.g., filling prescriptions, getting lab work, contacting medical team); document and check on progress at next visit
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Encouraging independence, speak to child directly; increasing interaction between teen and health‐care provider Discuss importance of preparing the patient for health‐care independence and address any anxiety Discuss plans for insurance coverage Encourage/facilitate scheduling visit with adult gastroenterologist
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Provide information about diet, fitness, drugs, alcohol, sexuality/fertility Inform patient of legal guidelines around information that can/will be shared with parent/guardian, and patient's rights to health care decisions after age 18 Provide patient with medical summary for work, school, and HCT to adult gastroenterologist
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| Clinic HCT Guidelines |
Six Core Elements to establish a HCT Program (GotTransition.org): |
Create a policy/guide Track and monitor progress Assess self‐care skills (transition readiness); use a standardized transition readiness assessment (TRA) Develop a HCT plan with patient and family; transition planning Transfer to an adult gastroenterologist Confirm transfer and assess patient/family feedback
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| Transition readiness assessments |
Transition Readiness Assessment Questionnaire (TRAQ;
17
)—A 29‐item patient‐report measure with two domains: self‐management and self‐advocacy
STARx questionnaire
18
—An 18‐item patient‐ and parent‐ report measure with three subdomains: communication with medical provider, disease knowledge, and self‐management
Transition Readiness Assessment from Got Transition
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