Demographics
In total, 62 AYAs met study criteria; 60 were recruited into the study
and 2 refused participation. Of the 60 enrolled participants, 56
completed the intervention, 1 was incarcerated during intervention
timeframe and 3 dropped out. The analysis was completed on the 56 who
completed both study questionnaires. Demographics, including gender,
diagnosis, race, age, insurance and SSI status, and participant-reported
educational status and vocational goals are shown in Table 3. Of note,
85.9% reported that they were either in college, applying, or planning
to go to college and 42.1% were actually enrolled in college.
At intake, 48% of participants reported needing help reading hospital
materials sometimes/often/always, 27% felt not at all/a little
bit/somewhat confident in completing medical forms, and 14% reported
sometimes/often/always having problems learning about their medical
condition because of difficulty understanding written information.
Short-term (interim)
outcomes: Transition readiness, disease self-management scales and
barriers to transition
Pre/post scores for the TRAQ, SCD Knowledge, Confidence Managing SCD,
Pain Management and AMBS scales are shown in Table 4. There was
significant improvement in total TRAQ scores on 3 of the 5 TRAQ
subscales; the two subscales that did not show significant change were
already high at baseline. SCD knowledge also improved significantly. In
addition to the SCD knowledge questionnaire, patient’s
self-identification of SCD genotype was assessed at baseline and at
exit. At enrollment 80% knew their genotypes correctly, with 3 giving
wrong answers and 8 saying “don’t know.” Of the 11 that did not report
genotype correctly at enrollment, 9 were able to do so at exit. In the
post-test survey, 95% correctly reported their genotypes. Scores on
both confidence in disease management and use of disease/pain management
skills subscales also improved significantly, while barriers to
medication adherence decreased significantly from baseline to exit
(Table 4).
As part of the TN intake in Session 1, participants were asked to
identify transition barriers they felt or experienced, and the TN
recorded these as well as barriers she observed throughout the
intervention period (Table 5). Significant differences between
participants’ and TN’s identification of barriers were seen in several
areas: difficulty identifying a provider, lack of appointment
availability, lack of insurance, and provider delay in transition
planning. Top concerns of the TN were patient’s relocation to college
and parent/patient’s reluctance to transition due to difficulty
“letting go.” Patients’ top concerns were difficulty finding a new
provider/relocation, identifying a new provider and relocation for
college. Of these participants, 42% were in college at post-test and an
additional 44 % (25/57) were planning to or applying to go to college.