Department of Community Programs, Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana.
Pediatric Hematology, Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana.
Pediatr Blood Cancer. 2022 Aug;69(8):e29619. doi: 10.1002/pbc.29619. Epub 2022 Apr 20.
Sickle cell disease (SCD) leads to end-organ damage and shortened life expectancy. The second highest incidence of SCD in Indiana is in Lake County, but until 2017, there was no SCD expert within 65 miles. The Indiana Hemophilia and Thrombosis Center (IHTC) developed the Sickle Care coordination OutReach and Education (SCORE) program in 2017 to bring high-quality, guideline-based care to children with SCD.
The St. Vincent IRB deemed this retrospective analysis of SCORE clinic care from 2017 to 2020 exempt. Data on the number of transcranial Dopplers (TCD) performed, HU dosing escalation, and vaccine rates were collected along with the number of school and home visits completed.
Fifty-three children, adolescents, and young adults completed 288 SCORE clinic visits during the study period; over 75% completed at least three clinic visits. Mean HU dose increased significantly with SCORE clinic care. TCD screening rates increased every year starting in 2018 through 2020 when we added local care coordination. One hundred seventy-three vaccines were administered in SCORE outreach clinics. The PPSV23 vaccines had a 100% acceptance rate, and seasonal influenza had a 75.8% acceptance rate.
Access to care coordination services and local hematology specialty care alleviates barriers to care and enables comprehensive SCD care delivery to children in need. Prior to the establishment of the SCORE clinic, 75% of children in Lake County were not receiving recommended stroke screening. The SCORE clinic model demonstrates feasibility and impact when delivering on the promise of high-quality care for children with SCD.
镰状细胞病（SCD）可导致终末器官损伤和预期寿命缩短。印第安纳州 SCD 发病率第二高的是莱克县，但直到 2017 年，该县 65 英里内都没有 SCD 专家。印第安纳血友病和血栓形成中心（IHTC）于 2017 年成立了镰状细胞护理协调外展和教育（SCORE）项目，旨在为 SCD 患儿提供高质量、基于指南的护理。
圣文森特 IRB 将这项对 2017 年至 2020 年 SCORE 诊所护理的回顾性分析认定为豁免。收集了 TCD 检查次数、HU 剂量升级和疫苗接种率的数据，以及完成的家访和校访次数。
53 名儿童、青少年和年轻成年人在研究期间完成了 288 次 SCORE 诊所就诊；超过 75%的人至少完成了三次就诊。随着 SCORE 诊所护理的进行，HU 剂量显著增加。TCD 筛查率从 2018 年开始逐年增加，到 2020 年我们增加了当地的护理协调。在 SCORE 外展诊所共接种了 173 种疫苗。PPV23 疫苗的接种率为 100%，季节性流感疫苗的接种率为 75.8%。
获得护理协调服务和当地血液学专业护理可缓解护理障碍，为有需要的儿童提供全面的 SCD 护理。在 SCORE 诊所成立之前，莱克县 75%的儿童未接受推荐的脑卒中筛查。SCORE 诊所模式在为 SCD 患儿提供高质量护理的承诺方面展示了可行性和影响力。
