Intervention design
The intervention aimed to improve patient knowledge and skills for disease self-management and to prepare for transfer to an adult care provider, with five components derived from GOT TRANSITION® best practice recommendations:43
As shown in the Process Map of Intervention (see Table 1), each youth had three planned interactions with TN over 6-12 months and a 3-month post-intervention follow-up call. Additional calls were permitted as needed. The first visit entailed an in-person protocolized TN transition assessment which included future plans for healthcare and mental health services; educational and vocational goals; housing and geographic relocations; changing decision-making abilities and rights; insurance coverage needs, changes, and rights; and current providers and support system (see Supplement 1). SCD specific knowledge tools were also introduced at this visit. Visits 2 and 3 addressed identified gaps in disease knowledge/ management and skills; development of a portable medical summary; and identification and contact with adult provider. Barriers to transition were reviewed at each visit, and a barriers checklist (see Supplement 1) was completed by the TN based on AYA self-report and TN observation. The TN completed the sessions at mutually agreed upon times and there was flexibility for each visit to be broken up into several in-person or phone visits based on patient preference. The TN kept detailed records of the dates and time spent for each interaction and whether they occurred in person or by phone. The TN also met weekly for case review with the SCD clinical lead as well as with the entire SCD clinical team consisting of the physicians, nurse practitioners, and social worker.