Table 1.

Health care transition interventions for SCD according to the Six Core Elements of Health Care Transition

Six Core Elements of Health Care Transition with intervention description
1. Transition policy (informs youth of timing and upcoming process for transition)
2. Tracking and monitoring transition progress
3. Transition readiness/self-care assessment
Non–disease-specific instruments
Successful Transition to Adulthood with Therapeutics (STARx; parent and child forms)35
Adolescent autonomy checklist36
Newest vital sign37 (measures health literacy)
Transition Readiness Assessment Questionnaire (TRAQ)30
Disease-specific instruments
Disease knowledge and self-management (adapted to SCD from the National Hemophilia Foundation Transition guidelines)38
Transition Intervention Program (TIP)–Readiness for Transition (TIP-RFT)39
Self-administered Sickle Cell Transition Intervention Program skills checklists40
American Society of Hematology (ASH) transition toolkit*
4. Transition planning (develop individualized transition plans, prepare individual, identify provider)
Problem-solving education (cognitive-behavioral intervention that teaches problem-solving skills as a way to cope with life stressors): acceptability demonstrated through focus groups41
Skill-based educational handout (educational handouts provided in clinic and informed by items flagged in the readiness assessment as “needs practice”)42
Music therapy (music therapy–based intervention to increase disease knowledge, self-efficacy, clinic attendance, and reduce ED visits): disease knowledge improved, and patients reported satisfaction with intervention43
Education in clinic using hand-held device (general disease education, healthy living, general career and vocation guidance): found to improve disease knowledge17
SCD-Plane (individualized transition plan informed by neuropsychological testing): used to inform academic planning and local services44
SCD-specific web-based portal (designed to improve communication with providers, improve decision-making, facilitate access to laboratory results and scheduling): shown to be feasible, acceptable, and improve patient-provider communication, but not decision-making45
iManage, a prototype app designed to promote self-management skills: rated as feasible and beneficial by SCD users26
Chronic Disease Self-Management Program (a 6-week group-based intervention led by lay leaders with a chronic health condition): increased self-efficacy, but not disease-specific self-efficacy46
Education about sickle cell heredity (in-clinic sessions by a health educator): feasibility and increased knowledge demonstrated28
Personal health record education (tool used to increase knowledge of personal medical history given in clinic by social workers): shown to be feasible and able to identify areas of gap in medical history knowledge29
5. Transfer of care/initial adult provider visit (schedule of first adult visit, transfer of medical records, care for patient until first adult visit completed, confirm adult visit completed)
Visit of adult provider facilities prior to leaving pediatric care: shown to increase rate of fulfillment of first visit with adult provider18,47
Transition sickle cell clinic with early introduction to adult provider: lower levels of negative affect (fear and sadness) and higher levels of positive affect (serenity and joviality) among youth who participated in the transition clinic compared with adults who did not48
6. Transition completion/ongoing care/consumer feedback
Young adult perspectives of the most important topics to include in transition programming: help in selecting adult provider, seeking emergency care, medication knowledge and medication adherence support, disease education, and being aware of the impact of health behaviors on one’s health11,49
All Six Core Elements of transition described in 1 single program
Virginia Commonwealth University’s TIP: a multidisciplinary comprehensive program that begins transition programing and preparation at age 15 years using a curriculum developed by the program members; it measures readiness using the TIP-RFT survey, transfers patients after high school graduation, mostly within the same health system, and tracks patients during integration into adult care27

^*American Society of Hematology pediatric to adult hematologic care transition (https://www.hematology.org/clinicians/priorities/5573.aspx).