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
- An individualized transition plan
- A portable medical summary co-constructed by patient and TN, and
reviewed by the pediatric hematology provider(s) prior to transition
utilizing MyHealth Passport44
- Education about SCD and the skills needed for disease self-management,
particularly addressing quality of care, adherence, and utilization of
emergency services
- Education of family members about their role in transition while
focusing intervention on AYAs
- Facilitating transfer to an adult provider (appointment-making,
accompaniment, and post-appointment follow-up call).
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.