Limitations
A limitation of the assessment tool is that it does not incorporate the perspectives of the other stakeholders (adolescents, parents, adult providers). Further, some of the items in our tool are measuring utilization of services and not specifically transition readiness. As with most transition readiness measures, our provider tool does not have established reliability and validity [14]. We plan to test for reliability and validity once enough data and patient outcomes have been collected. Additionally, because of the small number of patients who have transferred to adult care since implementation of the tool, we did not examine the association between readiness scores and clinical outcomes, such as fulfillment of first adult provider visit and hospital utilization following transition to adult care. As we continue to assess adolescent patients and track their progress following transition, we will be able to examine these associations with a larger group.
Future Plans
Since the implementation of the tool in our program, we have realized that we may need to start assessing patients at an earlier age and perhaps multiple times throughout adolescence. Some of our patients have guardianship and conservatorship issues and require more time to discuss options with the family and put in place the appropriate support and assistance prior to the transfer of care. Further, patients that have low compliance to clinic appointments are not receiving all elements of the transition program curriculum and in turn have fewer opportunities to prepare for transition. To address some of our current limitations, we plan to incorporate a patient and parent readiness assessment and examine the associations between the provider assessment and patient information such as medical literacy quizzes, clinic compliance, and fulfillment of the first adult provider visit. Assessment from all 3 perspectives (patient, parent, and provider) will offer a 360-degree view of transition readiness perception which should improve our ability to identify at-risk families and tailor transition planning to address barriers to care. In addition, our future plans include development of a mechanism to inform patients and families about the domain scores and action plans following the transition readiness meetings and include scores into the electronic medical records. Finally, the readiness assessment tool has revealed some gaps in our transition educational curriculum. Most of our transition learning involves providing and evaluating information provided, but we are not systematically assessing actual acquired transition skills. We are in the process of developing and implementing skill-based learning for activities such as calling to make or reschedule an appointment with an adult provider, arranging transportation, etc.
Conclusion
In conclusion, the provider transition readiness assessment has been a helpful tool to monitor progress of adolescents with SCD towards readiness for transition. The QI methodology and PDSA cycle approach has not only allowed for testing, development, and implementation of the tool, but is also allowing ongoing systematic refinement of our instrument. This approach highlighted the psychosocial challenges of our families as they move toward the transfer of care, in addition to the need for more individualized planning. The next important step is to evaluate the validity and reliability of the measure so we can better evaluate the impact of transition programming on the transfer from pediatric to adult care. We found the PDSA cycle approach to be a framework that can efficiently and systematically improve the quality of care of transitioning patients with SCD and their families.