Academic Challenges and School Service Utilization in Children with Sickle Cell Disease.
Academic Challenges and School Service Utilization in Children with Sickle Cell Disease.
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DOI：
10.1016/j.jpeds.2020.11.062
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发表时间：
2021-03
期刊：
影响因子：
--
通讯作者：
McGann PT
中科院分区：
文献类型：
--
作者：
Karkoska KA;Haber K;Elam M;Strong S;McGann PT
描述通过家长指导的筛查工具确定的镰状细胞病(SCD)儿童的学术担忧和风险分层，并将这些担忧的比率与临床人群中实际的学校服务利用率进行比较。我们完成了对2017-2018和2018-2019学年因家长提出或临床团队注意到的与学校相关的担忧而转诊至学校干预计划的SCD患者的回顾。所有家长都完成了简明的学校需求调查表(BSNI)，这是一种有效的家长反应工具，用于对学业风险进行分层。特殊教育服务率、年级保留率和神经心理测试结果被记录下来。临床病史，疾病修正疗法的使用，以及实验室和神经成像研究的结果也被获得。描述性统计用于检查人口统计学信息、临床病史和BSNI结果。137名独特的患者(年龄范围从14个月到19岁)在研究期间完成了BSNI，总共参加了181项活动。根据BSNI风险分层，45%的患者被认为是低风险患者，36%的患者被认为是中度患者，19%的患者被认为是高学术风险患者。超过一半的父母担心他们是否有能力为孩子的需求辩护。尽管符合504条款住宿计划的法律资格，但只有20%的人制定了计划。学业上的担忧是常见的，31%的儿童报告了个性化教育计划，20%的儿童报告了成绩保留/补救。患有SCD儿童的家长对学业挑战的担忧仍然很高；然而，由于多种原因，学校服务利用率仍然不成比例地低。
To describe the academic concerns and risk strata of children with sickle cell disease (SCD) as identified through a parent-directed screening tool and to compare the rates of these concerns with actual school service utilization in the clinic population. We completed a retrospective review of patients with SCD referred to the school intervention program during the 2017–2018 and 2018–2019 school years due to a school-related concern raised by parents or noted by the clinical team. All parents completed the Brief School Needs Inventory (BSNI), a validated parent-response tool used to stratify academic risk. Rates of special education services, grade retention, and results from neuropsychological testing were captured. Clinical history, the use of disease-modifying therapy, and results from laboratory and neuroimaging studies were also obtained. Descriptive statistics were performed to examine demographic information, clinical history, and BSNI results. 137 unique patients (age range – 14 months to 19 years) completed the BSNI during the study period, for a total of 181 events. According to BSNI risk-stratification, 45% of patients were deemed low, 36% moderate, and 19% high academic risk. Over half of parents were concerned about their ability to advocate for their child’s needs. Despite legal qualification for a Section 504 accommodation plan, only 20% had established plans. Academic concerns were common with 31% of children reporting an Individualized Education Program and 20% with grade retention/remediation. Concerns for academic challenges remain high amongst parents of children with SCD; however, school service utilization remains disproportionately low due to numerous reasons.
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影响因子：
39.2
作者：
Kind AJ;Jencks S;Brock J;Yu M;Bartels C;Ehlenbach W;Greenberg C;Smith M
通讯作者：
Smith M
影响因子：
8
作者：
Lipkin, Paul H.;Cartwright, J. Daniel;Tilton, Ann Henderson
通讯作者：
Tilton, Ann Henderson
影响因子：
2.2
作者：
King, AA;Tang, SJ;DeBaun, MR
通讯作者：
DeBaun, MR
影响因子：
3.4
作者：
Durfey, Shayla N. M.;Kind, Amy J. H.;Trivedi, Amal N.
通讯作者：
Trivedi, Amal N.
影响因子：
2.2
作者：
Epping, Amanda S.;Myrvik, Matthew P.;Scott, J. Paul
通讯作者：
Scott, J. Paul