Clinic of Pediatric Hematology-Oncology, Department of Pediatrics, Azienda Ospedaliera-Università di Padova, Padova, Italy.
Pediatr Blood Cancer. 2012 Dec 15;59(7):1275-9. doi: 10.1002/pbc.24110. Epub 2012 Feb 22.
Comprehensive care and advances in clinical investigations have reduced morbidity and mortality in sickle cell disease (SCD), but only a minority of children with SCD has access to comprehensive care. In Europe the majority of patients with SCD are immigrants who present barriers in accessing the health system; therefore, new evidence-based models of comprehensive care are needed to ensure that all SCD patients receive high-quality care, overcoming patient- and health system-related barriers. We wanted to verify if addressing the specific needs of immigrant patients contributes to improving adherence.
Linguistic, cultural, social issues were considered in organizing comprehensive care in 2006. Hospital's records were used to determine access from 2006 to 2010 and to compare adherence before and after 2006.
Ninety-four patients with SCD were enrolled in comprehensive care; 94% were first generation immigrants (81% African). Age at diagnosis was higher for children born abroad vs. children born in Italy (66.08 vs 25.36 months, P < 0.005). Since 2006, children were seen at least once a year, with 100% adherence to follow-up appointments. Coverage increased from 26% to 97% for flu vaccination, from 80% to 92% for pneumococcus immunization, from 27% to 100% for Transcranial Doppler (TCD) screening (P < 0.001). Emergency Department access/patient/year and inpatient admissions/patient/year decreased from 2.3 to 0.98 and from 0.30 to 0.25, respectively (P < 0.001).
Comprehensive care can be delivered to vulnerable groups obtaining high adherence if linguistic, cultural, social issues are addressed. This model may merit assessment in other communities where immigrants represent the majority of patients.
镰状细胞病（SCD）患者的综合护理和临床研究进展降低了发病率和死亡率，但只有少数 SCD 患儿能够获得全面护理。在欧洲，大多数 SCD 患者是移民，他们在获得医疗服务方面存在障碍；因此，需要新的基于证据的综合护理模式，以确保所有 SCD 患者都能获得高质量的护理，克服与患者和医疗系统相关的障碍。我们想验证解决移民患者的特殊需求是否有助于提高其遵医性。
2006 年，我们在组织综合护理时考虑了语言、文化和社会问题。我们使用医院的记录来确定从 2006 年到 2010 年的就诊情况，并比较 2006 年前后的遵医性。
共有 94 名 SCD 患儿接受了综合护理；94%是第一代移民（81%来自非洲）。在国外出生的患儿的诊断年龄高于在意大利出生的患儿（66.08 个月比 25.36 个月，P<0.005）。自 2006 年以来，儿童每年至少就诊一次，100%的患儿按时复诊。流感疫苗接种覆盖率从 26%增加到 97%，肺炎球菌免疫接种覆盖率从 80%增加到 92%，经颅多普勒（TCD）筛查覆盖率从 27%增加到 100%（P<0.001）。急诊就诊次数/患儿/年和住院次数/患儿/年从 2.3 次减少到 0.98 次，从 0.30 次减少到 0.25 次（P<0.001）。
如果能够解决语言、文化和社会问题，为弱势群体提供全面护理可以获得很高的遵医性。这种模式可能值得在其他移民占多数的社区进行评估。
