Limitations
This study was a single-group pre-post proof of concept study. The lack
of a comparison group is a weakness although the magnitude of the
improvements seen following the intervention provides significant
support for conducting a larger randomized trial. Because the youth did
not transfer to adult care during the study period, the impact on this
important metric will need to be assessed in future studies as well.
Some measures of program outcome were designed by the study team (e.g.,
SCD knowledge) and need further psychometric assessment. The study
originally planned to enroll a second group of youth that would include
60 AYA’s with persistent asthma cared for in a primary care clinic,
along with the 60 AYAs with SCD we did recruit. However, barriers arose
early in our attempt to utilize the primary care setting including
determining acuity of persistent asthma to fit recruitment criteria,
finding space to meet with patients, and integrating TN into the
existing primary care team. For this reason, the efforts of the TN
reported here focus on AYA with SCD who were seen in the subspecialty
Pediatric Hematology service. Other limitations included lack of
sustainability for the program based mainly on lack of a billing option,
and reliance on a single individual TN rather than making transition
planning and care part of the culture of the entire clinical team. The
impact of the COVID-19 pandemic on our medical institution also
interrupted ongoing transition planning and availability of adult
providers.