Defining the Impact of Hemophilia: The Academic Achievement in Children With Hemophilia Study

Abstract

ABSTRACT. Objectives. We characterized a population-based cohort of school-aged children with severe hemophilia with respect to type of treatment, on-demand versus prophylaxis, and frequency of bleeding episodes in the year before enrollment. We also investigated the association between hemophilia-related morbidity, measured by number of bleeding episodes in the year before enrollment, and academic performance after adjustment for other factors known to have an effect on achievement. Finally, we explored the mechanisms for the association between bleeding episodes and academic achievement.Study Design. This study was a multicenter investigation of boys 6 to 12 years old with severe factor VIII deficiency (clotting factor level <2%) receiving care in US hemophilia treatment centers. Children with a history of inhibitor, severe developmental disorder, significant psychiatric disorder, or insufficient fluency in English were excluded from the study. On-demand treatment was defined as administration of clotting factor on the occurrence of a bleeding episode. Prophylactic therapy was defined as a course of regular infusions for >2 months with a goal of preventing bleeding episodes. Academic achievement was measured by the Wechsler Individual Achievement Test. Quality of life was measured by the Child Health Questionnaire. Of particular interest was the Physical Summary (PhS) measure of the Child Health Questionnaire. The type of information captured by the PhS includes limitations in physical activity, limitations in the kind or amount of schoolwork or social activities the child engaged in, and presence of pain or discomfort.Results. One hundred thirty-one children were enrolled, a median center recruitment rate of 77%. The mean age of the participants was 9.6 years, and approximately half of the participants had completed less than the fourth grade at the time of enrollment. Sixty-two percent of the children were on prophylaxis at enrollment, and 9% had previously been on prophylaxis but were currently on on-demand therapy. Two groups were defined: ever treated with prophylaxis and never treated with prophylaxis. For those ever treated, treatment duration ranged from 2.7 months to 7.7 years, with one half of the children treated with prophylaxis for >40% of their lifetimes; 29% had always been on on-demand therapy. Children in both treatment groups were similar with respect to age, clotting factor level, parents' education, and IQ. The median number of bleeding episodes experienced in the year before enrollment for the cohort as a whole was 12. The median number of bleeding episodes in children on prophylaxis at enrollment was significantly lower than in children on on-demand therapy (6 vs 25.5).The mean achievement scores were within the average range of academic performance: reading, 100.4; mathematics, 101.6; language, 108.1; writing, 95.4; and total achievement, 102.5. When children were categorized as above or below the study group median by number of bleeding episodes, those who had a low number of bleeding e...

High School Completion Rates Among Men with Hemophilia

“…Another study 11 involving 131 children aged 6 -12 years with severe hemophilia found that excessive absences from school resulted in lower levels of academic achievement. Patients with extenuating medical circumstances, including treatment with inhibitors, and patients with considerable developmental, mental, and/or psychiatric disorders were excluded from the study.…”

The impact of chronic hemophilic arthropathy on children school life

“…Relation with their schoolmates was negatively affected: verbal violence and discrimination reaction from colleagues and integration difficulties at classroom. Recently, Gringeri et al found that, Old children had impairments in the social areas of "perceived support" and "friends" [3]. Furthermore, another study found Fifty-six percent of hemophiliac children with abnormalities in their social functioning and the severity of the disease was [10].…”

“…Repeated bleeding into joints may result in orthopedic problems due to hemophilic arthritis and thus limit activities and restrict social participation [1]. Despite advances in treatment, children with he- mophilia continue to miss more school than their classmates, which may put them at a disadvantage both academically and socially [2,3]. Even when they are in school, they are often not allowed to participate in athletic activities, which may interfere with the development of social skills, self-esteem, and friendships [4].…”

Investigation of the Relation Between Intraarticular Bleedings and Symptom Severity of Attention Deficit Hyperactivity Disorder in Children and Adolescents with Haemophilia

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