Healthy People 2020 recommend vaccination rates of 80% and 90% for influenza and PCV13 vaccines, respectively, in the general pediatric population [36]. We have met this goal for the influenza vaccine, but have room to improve for other recommended vaccines for children with SCD. Ultimately, our goal is to provide these vaccines to 100% of children with SCD at our institution. One barrier to achieving high vaccination rates is the lack of provider knowledge on the creation of catch-up vaccine schedules. A study of primary care providers showed that they frequently omitted vaccines when creating catch-up schedules, including the pneumococcal conjugate vaccine for healthy children [37]. Another hurdle is coordination of care between primary and specialty care, as these vaccines could be given in either setting. A recently published study found that only 20% of children with SCD had care coordination between primary and specialty care [38]. Promoting shared responsibility and information on the administration of vaccinations for children with SCD between primary and subspecialty care, and the development of state-wide immunization registries, may help alleviate these challenges.
In this study, our rates of hydroxyurea use among children with Hb SS and Hb S-β 0 thalassemia are higher than in other reported studies [12]. We promote hydroxyurea use in this population of children based on the recently published safety data in infants and young children with Hb SS and Hb S-β 0 thalassemia [7,32,39] and the significant benefits seen in adults, including improved survival [6,34,35,40]. Future efforts will include tracking outcomes, including the rates of acute chest syndrome and pain episodes, among children who are and are not taking hydroxyurea.
In this study, we found approximately 70% of eligible children were screened with transcranial Doppler each year from 2008–2012, which is higher than the 45% annual screening rate reported in the literature [10]. One reason our transcranial Doppler screening rates may be higher is that a technician is available to perform these tests on certain days that coincide with the pediatric hematology clinic, allowing patients and families to get this test and have a clinic visit on the same day. However, choosing a 12-month period for receipt of transcranial Doppler screening may be too conservative for centers who do not have such ready access to screening; reporting receipt of transcranial Doppler screening within a 15-month time period may be more appropriate and achievable.
Our study has several limitations. First, it was conducted in a single center with well-established electronic data systems, which are not available in many centers. Our hope is that this model can be replicated by others who seek to use EHR to improve the care of persons with SCD. Second, this work was performed in Massachusetts, a state with near-universal health care insurance coverage. As the Affordable Care Act is implemented nationally [41], other states may see improved performance on quality metrics as more people obtain health insurance. Third, although the EHR was designed to improve data capture for clinical care and quality initiatives, advanced clinical decision support systems were not incorporated due to the limitations of the EHR. The use of prompts for needed clinical care may further enhance performance on these measures. Fourth, this study is limited to children with SCD, who are traditionally monitored more closely than their adult counterparts. Efforts are currently underway to replicate these efforts with adults with SCD at our institution. Finally, the quality metrics in this study are process measures in the delivery of high quality SCD care. Future efforts will focus on linking outcomes to these measures, such as hydroxyurea use to reduce the frequency of acute chest syndrome and painful episodes.