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.