Department of Pediatrics, Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease, Vanderbilt University Medical Center, Nashville, Tennessee.
Rodeghier Consulting, Chicago, Illinois.
Pediatr Blood Cancer. 2019 Aug;66(8):e27755. doi: 10.1002/pbc.27755. Epub 2019 May 1.
Children with sickle cell disease (SCD) are at risk for cognitive deficits. Limited data describe whether comprehensive cognitive evaluation improves education resources and whether caregivers perceive the assessment as beneficial. We tested our two hypotheses: (a) an integrated comprehensive cognitive evaluation program in children with SCD results in increased special education services allocation; and (b) caregivers will value comprehensive cognitive evaluation services provided.
In a tertiary care medical facility, as part of quality improvement project, in a before-and-after evaluation between March 2011 and July 2014, we examined the impact of targeted comprehensive cognitive evaluation on change in special education services. We also evaluated the caregiver's perception regarding the utility of the provided services.
A total of 21% (42 of 196) students (median age 11 years, range 3-18) with SCD were referred for cognitive assessment due to overt stroke (n = 11), silent stroke (n = 14), or concerns about cognitive or academic functioning without evidence of strokes (n = 17). At baseline, 45.2% received special education services and after the comprehensive cognitive evaluation 86.7% received special education services (P < 0.001). Among 33 caregivers who completed the survey, 97% reported that the assessment was helpful and 60% indicated that assessment led to beneficial changes for their children at school.
Education advocacy coupled with comprehensive cognitive assessment in students with SCD improved access to special education services, and caregivers uniformly endorse this service as having added value.
患有镰状细胞病（SCD）的儿童存在认知功能缺陷的风险。有限的数据描述了全面的认知评估是否能改善教育资源，以及护理人员是否认为评估是有益的。我们检验了两个假设：（a）在 SCD 儿童中实施综合全面认知评估计划会增加特殊教育服务的分配；（b）护理人员将重视提供的全面认知评估服务。
在一家三级保健医疗机构中，作为质量改进项目的一部分，我们在 2011 年 3 月至 2014 年 7 月进行了前后评估，研究了针对性全面认知评估对特殊教育服务变化的影响。我们还评估了护理人员对所提供服务的实用性的看法。
共有 21%（42/196）的 SCD 患者（中位年龄 11 岁，范围 3-18 岁）因显性中风（n=11）、隐匿性中风（n=14）或对认知或学业功能的担忧但无中风证据（n=17）而接受认知评估。基线时，45.2%的患者接受特殊教育服务，全面认知评估后 86.7%的患者接受特殊教育服务（P<0.001）。在完成调查的 33 名护理人员中，97%的人表示评估很有帮助，60%的人表示评估对孩子在学校的有益变化。
在 SCD 患者中，教育倡导加上全面的认知评估，改善了获得特殊教育服务的机会，护理人员普遍认为这项服务具有附加值。
