Discussion
This study demonstrates that the use of an intensive TN intervention in a US urban academic center subspecialty practice is feasible, acceptable to participants, and effective in improving transition readiness and disease knowledge, and reducing patient and systems barriers to transition. Several “lessons learned” were identified by the TN and the team in implementing a transition intervention for AYAs with SCD.
AYAs with SCD acknowledge the importance of transfer from pediatric to adult care but often demonstrate poor readiness for this important care transition.47 Thus, this TN intervention focused on readiness and barriers, working with the participants to address those concerns. Providers were encouraged to be aware of the barriers in transition planning,28 especially since the roles of the pediatrician and the adult physician and the ways in which they interact with their patients are quite different.48Many of the barriers identified by our participants indicated lack of familiarity with negotiating the healthcare system or insurance, rather than actual systemic barriers, and these were readily addressed by TN.
The high rate of concern by the TN and participants related to college attendance and health care access was realistic, and reflected a confluence of barriers: the logistics of transfer to adult care in a setting unfamiliar to both the TN and youth, several insurmountable out of state insurance coverage issues, and the demands on the youth to master several novel tasks simultaneously. The AYAs in our sample had high rates of attending or planning to attend college. As of 2019, in the Bronx, 37.3% of 18-24 year old youth were enrolled in or graduated from college.49 Thus, the AYAs in our sample reported similar rates of attending college compared to the general Bronx population. It is noteworthy that despite their college plans, the AYAs in our study reported significant health literacy concerns. The experience with the college bound youth in our program led to changes in pediatric hematology service policies –to implement more intensive case management and coordination of care with a local provider near the college to assure access to urgent and emergency services as well as pain management.
There are several ways the intervention could be improved. The time of emerging adulthood50 and healthcare transition is a time of immense change in many aspects of life: education, vocation, living arrangements, relationships, financial independence, and legal decision-making.39 Participants were recruited for this study between the age of 17 and 20, as they neared time for transfer to adult care, which was based on restrictions imposed by the funding available for the program. However, the consensus recommendation is to start the transition process earlier, at 12 or 13.13, 24, 25 This recommendation reflects the need for increased age-appropriate disease education, skills acquisition and practice, and increased responsibility for self-care as youth navigate the developmental challenges of increasing independence, peer relationships, and future planning. A longer period of education about self-management skills and disease knowledge may be essential to significantly impact ED reliance and appropriate health care utilization. As health care utilization is expected to increase over time in SCD, other investigators have reported stabilization as a potentially positive effect.31 Without a comparison group we could not assess the efficacy of the TN intervention on health care use or morbidity. Starting earlier would allow youth to spend more time with the TN and to build greater rapport and trust, which the TN reported to be a key factor for the success of the intervention. On a related note, for a study population of predominantly Black/African-American and Hispanic AYA’s with SCD51it seems pertinent to note also that the TN was a woman of color. In addition, the TN noted the participants’ desires for peer support, suggesting the need for/appeal of transition mentors (slightly older patients who have recently successfully transitioned), and/or a transition buddy system (providing a shared experience).
As healthcare systems see greater use of and payment for telehealth or video platforms in the wake of COVID, such platforms may be particularly useful both for engagement and for follow-up needed to enhance transition from pediatric to adult-oriented care. The most recent position paper from the Society for Adolescent Health and Medicine includes an endorsement of greater integration of technology in healthcare transitioning, including the electronic health record and telehealth.26 Expanding the TN intervention in this way could be time- and resource-saving and allow greater choice and flexibility for providers, families, and patients, particularly for AYA’s acclimated to technology use. Although an initial in-person TN assessment may help in creating a working relationship or sharing educational materials, shorter follow-up calls could be completed and documented without an in-person appointment. In addition, telemedicine for transition preparation and education may be a more acceptable time-saving format for AYAs as well. While our intervention was not designed to assess telehealth, the data kept by the TN indicated that visits by phone were often successful when in-person visits could not be accommodated into a participant’s or provider’s schedule, and these calls allowed for both education and case management activities that might otherwise have been missed.