Neunert Cindy E, Gibson Robert W, Lane Peter A, Verma-Bhatnagar Pragya, Barry Vaughn, Zhou Mei, Snyder Angela
Department of Pediatrics, Columbia University Medical Center and Morgan Stanley Children's Hospital, New York, New York.
Department of Emergency Medicine, Georgia Regents University, Augusta, Georgia.
Am J Prev Med. 2016 Jul;51(1 Suppl 1):S24-30. doi: 10.1016/j.amepre.2016.02.011.
Advances in primary prophylaxis have resulted in improved outcomes for patients with sickle cell anemia (SCA; i.e., hemoglobin SS- and Sβ(0)-thalassemia). Standard prophylactic measures include a first pneumococcal polysaccharide vaccine (PPV) and transcranial Doppler ultrasound (TCD) at age 2 years. Though efficacious, evidence suggests that delivery of these interventions is suboptimal. This study reports adherence to these measures and examines concordance across various data sources, using Registry and Surveillance for Hemoglobinopathies project data.
Retrospective database and SCA center chart review identified children with SCA aged 24-36 months between January 1, 2004, and December 31, 2008. PPV and TCD administration were determined through Medicaid and Children's Health Insurance Program administrative claims data, medical record review, and Georgia Registry of Immunization Transaction and Services. Analysis was conducted in 2015.
A total of 125 children met inclusion criteria. Forty-five (36.0%) children had documentation of both interventions, whereas 19 (15.2%) had no documentation of either intervention. Sixty-one (48.8%) children obtained only one intervention. Of these, more were likely to have had PPV than TCD (77.0% vs 23.0%, respectively, p<0.001). Agreement between claims data and medical record review was moderate for PPV (κ=0.55) and substantial for TCD (κ=0.74).
No single, reliable data source for tracking standard of care for children with SCA statewide was found. According to study data, prophylaxis measures were not universally implemented during the surveillance period. Further research is needed to adequately track changes over time, determine risk groups, and develop methods of evaluating important metrics.
初级预防措施的进展已改善了镰状细胞贫血（SCA，即血红蛋白SS型和Sβ(0)地中海贫血）患者的预后。标准预防措施包括在2岁时接种首剂肺炎球菌多糖疫苗（PPV）和进行经颅多普勒超声（TCD）检查。尽管这些干预措施有效，但有证据表明其实施情况并不理想。本研究利用血红蛋白病登记与监测项目数据，报告了对这些措施的依从性，并检查了不同数据源之间的一致性。
通过回顾性数据库和SCA中心图表审查，确定了2004年1月1日至2008年12月31日期间年龄在24至36个月的SCA儿童。通过医疗补助和儿童健康保险计划的行政索赔数据、病历审查以及佐治亚州免疫接种交易与服务登记处来确定PPV和TCD的实施情况。分析于2015年进行。
共有125名儿童符合纳入标准。45名（36.0%）儿童有两项干预措施的记录，而19名（15.2%）儿童两项干预措施均无记录。61名（48.8%）儿童仅接受了一项干预措施。其中，接受PPV的儿童比接受TCD的儿童更多（分别为77.0%和23.0%，p<0.001）。索赔数据与病历审查之间对于PPV的一致性为中等（κ=0.55），对于TCD的一致性为高度（κ=0.74）。
未找到用于追踪全州SCA儿童护理标准的单一可靠数据源。根据研究数据，在监测期间预防措施并未普遍实施。需要进一步研究以充分追踪随时间的变化、确定风险群体并开发评估重要指标的方法。
