J Pediatr Health Care. 2018 Sep-Oct;32(5):485-489. doi: 10.1016/j.pedhc.2018.04.018. Epub 2018 Jul 4.
Comprehensive care for children with sickle cell disease (SCD) includes penicillin prophylaxis, pneumococcal immunization, hydroxyurea therapy, and transcranial Doppler screening for stroke prevention. Along with caregiver education, these strategies have been shown to be effective in reducing early morbidity and mortality in this population. The subspecialty Infant Sickle Cell Clinic was initiated to improve access, education, patient outcomes, and family satisfaction.
Telephone surveys were conducted with parents to assess satisfaction with the Infant Sickle Cell Clinic, compliance with guidelines, and comfort level with managing their child's SCD.
This quality improvement project reported high levels of parent satisfaction and improved outcomes with the proposed approach but also presents areas for improvement.
Our report presents a unique model of providing care to families with infants newly diagnosed with SCD. The group format serves as a useful model to allow families an interactive educational session with guest speakers.
镰状细胞病（SCD）患儿的综合护理包括青霉素预防、肺炎球菌免疫接种、羟基脲治疗和经颅多普勒筛查以预防中风。随着对护理人员的教育，这些策略已被证明可有效降低该人群的早期发病率和死亡率。设立小儿镰状细胞病专科诊所是为了改善获得护理、教育、患者结局和家庭满意度的机会。
对父母进行电话调查，以评估他们对小儿镰状细胞病诊所的满意度、对指南的遵守情况以及对管理子女 SCD 的舒适度。
本质量改进项目报告了家长满意度高且采用拟议方法改善了结局，但也提出了一些需要改进的领域。
我们的报告提出了一种为新诊断为 SCD 的婴儿提供家庭护理的独特模式。小组形式是一种有用的模式，可以让家庭与客座演讲者进行互动式教育会议。
