Woolf A, Rappaport L, Reardon P, Ciborowski J, D'Angelo E, Bessette J
Division of Ambulatory Medicine, Children's Hospital, Boston, Massachusetts 02115.
J Dev Behav Pediatr. 1989 Apr;10(2):81-5.
There have been few recent studies investigating the scholastic progress of children with hemophilia. The advent of PL94-142, which ensures an appropriate educational program based on a child's specific learning disabilities, and home Factor VIII therapy, which increases the hemophiliac's school attendance and sense of freedom and control, might have had a positive impact on the academic performance of these patients. We investigated past and current educational functioning of 26 boys with hemophilia, using both parental and teacher reports. Twenty-two of these children were administered reading and math achievement tests. Results indicate that school absenteeism is a continuing problem for these children, with the average hemophiliac missing 18 school days in an academic year (median = 11 school days missed); one child had missed 77% of the year. Although these boys had normal intelligence and made average grades in school, six of the 22 tested performed more than two grade levels below expectations in reading and 10 performed greater than two grade levels below expectations in math. School underachievement did not necessarily correlate with disease severity (as indicated by serum factor level), school absenteeism, or grade point average. Although eight parents indicated that their children had past or current school problems, and teachers reported that greater than 50% of the group received special tutoring or classes for learning disabled students, six out of 22 (27%) performed below expectations in either math or reading and yet had no current individual educational remediation plan.(ABSTRACT TRUNCATED AT 250 WORDS)
最近很少有研究调查血友病患儿的学业进展情况。《94 - 142号公法》的出台确保了根据孩子的特定学习障碍制定合适的教育计划,而家庭使用凝血因子VIII治疗则提高了血友病患者的上学出勤率以及自主感和掌控感,这可能对这些患者的学业表现产生了积极影响。我们通过家长和教师的报告,调查了26名血友病男孩过去和当前的教育状况。其中22名儿童接受了阅读和数学成绩测试。结果表明,缺课仍是这些孩子面临的一个持续问题,血友病患儿平均一学年缺课18天(中位数为缺课11天);有一名儿童缺课达一学年的77%。尽管这些男孩智力正常,在校成绩也处于平均水平,但在接受测试的22名中,有6名在阅读方面的表现比预期低两个年级以上,10名在数学方面的表现比预期低两个年级以上。学业成绩不佳不一定与疾病严重程度(由血清因子水平表示)、缺课情况或平均绩点相关。虽然有8名家长表示他们的孩子过去或现在存在学业问题,教师报告称该组中超过50%的学生接受了针对学习障碍学生的特殊辅导或课程,但在22名中,有6名(27%)在数学或阅读方面表现低于预期,然而目前却没有个人教育补救计划。(摘要截选至250词)