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.