UCLA UCLA Previously Published Works Title High School Completion Rates Among Men with Hemophilia Permalink https://escholarship.org/uc/item/05b3d1xc Journal American Journal of Preventive Medicine, 38(4) ISSN 07493797 Authors Drake, John H Soucie, J. Michael Cutter, Susan C et al. Publication Date 2010-04-01 DOI 10.1016/j.amepre.2009.12.024 Peer reviewed eScholarship.org Powered by the California Digital Library University of California https://escholarship.org/uc/item/05b3d1xc https://escholarship.org/uc/item/05b3d1xc#author https://escholarship.org http://www.cdlib.org/ F U D D H P t M v a C R 4 © High School Completion Rates Among Men with Hemophilia John H. Drake, MSN, RN, J. Michael Soucie, PhD, Susan C. Cutter, MSW, MPA, Ann D. Forsberg, MA, MPH, Judith R. Baker, MHSA, Brenda Riske, MS, MBA, MPA Background: The benefıts of a high school diploma are well documented. Studies indicate that people with hemophilia have lower than average academic achievement, particularly if they have �12 bleeding episodes annually. Purpose: This study compares the high school graduation rate of men with hemophilia to that of the U.S. population of men. Methods: Data were obtained from the Universal Data Collection Program, a surveillance project conducted by approximately 130 hemophilia treatment centers in the nation. Data from 7842 men aged �18 years were evaluated to determine high school graduation status and were analyzed by race/ethnicity and severity of hemophilia. These data were collected between 1998 and 2008, and analysis was conducted in 2009. Results: Men with hemophilia A had higher or similar high school graduation rates across all racial/ethnic groups and all levels of hemophilia severity, compared with U.S. men of the same age. Graduation rates for black and Hispanic men with hemophilia B were higher or similar to rates of U.S. men, but rates for whites were lower, especially among those with moderate and mild disease. However, when graduation rates were controlled for areas where Amish populations reside, differ- ences in graduation rates for whites disappeared. Conclusions: In this study, participants obtained hemophilia care at comprehensive hemo- philia treatment centers. This multidisciplinary, family-centered care emphasizes prevention of complications, encourages medically supervised disease management, and facilitates psychoso- cial development. The care aims to maximize the affected child’s participation in school. This care approach may partially explain the higher-than-expected high school graduation rates among the study population, which is affected by a rare, chronic, and potentially debilitating disorder. (Am J Prev Med 2010;38(4S):S489–S494) © 2010 Published by Elsevier Inc. on behalf of American Journal of Preventive Medicine. I T i c a l m s t w w rom the Gulf States Hemophilia and Thrombophilia Center (Drake), niversity of Texas Health Science Center at Houston, Houston, Texas; ivision of Blood Disorders (Soucie), National Center on Birth Defects and evelopmental Disabilities, CDC, Atlanta, Georgia; Penn Comprehensive emophilia and Thrombosis Center (Cutter), Hospital of the University of ennsylvania, Philadelphia, Pennsylvania; New England Hemophilia Cen- er (Forsberg), University of Massachusetts Memorial Hospital, Worcester, assachusetts; Division of Pediatric Hematology/Oncology (Baker), Uni- ersity of California Los Angeles, Los Angeles, California; and Hemophilia nd Thrombosis Center (Riske), University of Colorado Denver, Denver, olorado Address correspondence and reprint requests to: John H. Drake, MSN, N, Gulf States Hemophilia and Thrombophilia Center, 6655 Travis, Suite 00, Houston TX 77030. E-mail: John.H.Drake@uth.tmc.edu. a 0749-3797/00/$17.00 doi: 10.1016/j.amepre.2009.12.024 2010 Published by Elsevier Inc. on behalf of American Journal of Preve ntroduction he benefıts of receiving a high school diploma or equivalency degree are well documented. U.S. Census data for 2007 indicate that annual income s much higher for people with a high school diploma ompared to those without one ($27,915 vs $18,734).1 In ddition, those with a high school diploma are not only ess likely to be living below the poverty level2 but also ore likely be in good health, maintain a healthy life- tyle,3 and have health insurance.4 Most studies of children with chronic illnesses, such as ype 1 diabetes, epilepsy, and sickle cell disease, all of hich can affect cognitive function, show that children ith these conditions have lower levels of academic chievement than their healthy peers.5–7 A study of per- ntive Medicine Am J Prev Med 2010;38(4S)S489–S494 S489 mailto:John.H.Drake@uth.tmc.edu f t t w f t c m i c t i s a c m r n c h e t g T i i p a t A s g m t s m a l y s a s w a d H b a b a r p q p m m w c c h s t d t h u a s g t M D D s f t c s r d u d l w ( � s N a y p b d 7 S490 Drake et al / Am J Prev Med 2010;38(4S):S489–S494 ormance on standardized tests in North Carolina found hat 270 students with various chronic medical condi- ions scored in the 51st percentile, whereas their state- ide peers scored in the 63rd percentile.8 However, dif- erences in achievement in that study were related more o socioeconomic issues and specifıc aspects of chronic onditions than to absences from school. The underlying causes of poorer academic perfor- ance for chronically ill children who are not cognitively mpaired are less well defıned than they are for those with ognitive impairments resulting from chronic illness. Al- hough excessive absenteeism in children with chronic llness has been well documented for many years, re- earch results have been mixed regarding the impact of bsences on academic achievement in children with hronic illness.9 There are few studies that address academic achieve- ent in individuals with hemophilia. Hemophilia is a are, chronic, inherited bleeding disorder in which ab- ormalities in blood clotting occur because of a defı- iency of factor VIII or IX. About 50% of people with emophilia have the severe form of the disorder and xperience frequent, spontaneous joint hemorrhages hat, without appropriate treatment, can lead to pro- ressive joint disease and loss of functional ability. hose with no history of meaningful head trauma or ntracranial hemorrhage typically have no cognitive mpairment. Nonetheless, studies involving children with hemo- hilia have revealed below average levels of academic chievement. In one study,10 standardized achievement ests were administered to 22 children with hemophilia. lthough the participants received average grades in chool, 27% scored more than two levels below their rade on standardized reading tests, and 45% scored ore than two grade levels below on standardized math ests. These children missed an average of 18 days of chool each year compared with an average of 11 days issed by their peers. However, factors such as excessive bsenteeism and severity of disease were unrelated to ower academic achievement in that study. Another study11 involving 131 children aged 6–12 ears with severe hemophilia found that excessive ab- ences from school resulted in lower levels of academic chievement. Patients with extenuating medical circum- tances, including treatment with inhibitors, and patients ith considerable developmental, mental, and/or psychi- tric disorders were excluded from the study. Mean aca- emic achievement scores for the group were average. owever, when patients were separated into two groups ased on number of bleeding episodes, differences in cademic performance were notable. A higher number of o leeding episodes (�12) correlated with increased school bsences and below-average aptitude in math and eading. A 4-year longitudinal study of 333 children with hemo- hilia found that, overall, participants had intelligence uotients (IQs) in the average range.12 However, partici- ants who experienced high levels of physical impair- ent from their hemophilia had lower academic achieve- ent and intellectual abilities, even after adjustments ere made for other intervening variables such as intra- ranial hemorrhage and HIV infection. The researchers oncluded that marked physical impairments resulted in indered ability to concentrate and learn, excessive ab- enteeism, and limited participation in non-academic ac- ivities that can enhance intellectual growth. The purpose of the current study was to use collected ata on participants of a public health surveillance system o compare high school graduation rates of men with emophilia with graduation rates of the general U.S. pop- lation of men. This project demonstrates the practical pplicability of IQ ranges and academic achievement tudies in children and how this affects their high school raduation and ability to become productive members of he community. ethods ata for this project were collected as part of the Universal ata Collection Program (UDC), a surveillance system ponsored by the CDC and conducted by approximately 130 ederally supported hemophilia treatment centers (HTCs) hroughout the U.S. since 1998. Participants give informed onsent, and data are collected annually by HTC staff using tandardized data forms. Demographic information collected includes gender, ace/ethnicity, fırst 3 digits of the ZIP code of current resi- ence, and month and year of birth; birth information was sed to calculate age at most recent HTC visit. Clinical and iagnostic data include hemophilia type (A or B) and base- ine factor activity (FA) level relative to normal. The FA level as used to categorize hemophilia severity as either mild FA 6%–50%); moderate (FA 1%–5.9%); or severe (FA 1%). The highest education level achieved was obtained by elf-report during the most recent UDC re-enrollment. inety percent of the data used were from UDC evaluations fter 2001, and 75% were from UDC evaluations after 2004. All men who had hemophilia A or B and were aged �18 ears were eligible to participate in the study. Of the 8936 atients for whom data were available, 94 were ineligible ecause their high school graduation status could not be etermined from information provided; after this exclusion, 842 men remained in the study. No additional exclusions ccurred. Subjects who reported completing 12 years of www.ajpm-online.net s � T c b s w ( c t G r s R O h t h r h m l w u p H b t w e p B h w r w w y b a h e t a r f a b le 1 . H ig h sc h o o l gr a d u a ti o n ra te s fo r U .S . m e n a n d fo r m e n w it h h e m o p h ili a (% [9 5 % C I] u n le ss o th e rw is e in d ic a te d )a g e (y e a rs ) P o p u la ti o n n R a c e o r e th n ic it y p -v a lu e b A ll W h it e B la c k H is p a n ic O th e r 1 8 U .S . m e n 1 0 7 ,8 4 3 8 3 .9 8 9 .1 8 0 .5 5 9 .0 N A M e n w it h h e m o p h ili a A 6 ,0 4 0 8 5 .2 (8 4 .3 , 8 6 .1 ) 8 8 .8 (8 7 .9 , 8 9 .8 ) 7 6 .8 (7 3 .6 , 7 9 .9 )* 7 1 .8 (6 8 .4 , 7 5 .3 ) 8 1 .5 (7 7 .4 , 8 5 .5 ) � 0 .0 0 1 M e n w it h h e m o p h ili a B 1 ,8 0 2 8 0 (7 8 .1 , 8 1 .8 )* 8 0 .4 (7 8 .3 , 8 2 .5 )* 7 9 .6 (7 3 .7 , 8 5 .4 ) 7 3 .1 (6 5 .1 , 8 1 .1 ) 8 3 .3 (7 5 .4 , 9 1 .3 ) 0 .2 1 8 –2 4 U .S . m e n 1 4 ,4 2 2 7 6 .5 8 0 .8 7 3 .8 6 2 .8 N A M e n w it h h e m o p h ili a A 2 ,1 3 7 7 9 .9 (7 8 .2 , 8 1 .6 ) 8 4 .1 (8 2 .2 , 8 6 .0 ) 7 1 .7 (6 6 .4 , 7 7 .0 ) 7 0 .1 (6 5 .0 , 7 5 .1 ) 7 6 .6 (7 0 .0 , 8 3 .2 ) � 0 .0 0 1 M e n w it h h e m o p h ili a B 5 2 9 7 0 .3 (6 6 .4 , 7 4 .2 )* 7 1 .2 (6 6 .7 , 7 5 .8 )* 6 3 .6 (5 0 .9 , 7 6 .4 ) 6 6 (5 2 .9 , 7 9 .1 ) 7 6 .3 (6 2 .8 , 7 9 .1 ) 0 .5 2 5 U .S . m e n 9 3 ,4 2 1 8 5 .0 9 0 .2 8 1 .9 5 8 .2 N A M e n w it h h e m o p h ili a A 4 ,0 9 5 8 8 .1 (8 7 .1 , 8 9 .1 ) 9 1 (9 0 .0 , 9 2 .1 ) 7 9 .8 (7 6 .1 , 8 3 .5 ) 7 5 .1 (7 0 .7 , 7 9 .6 ) 8 4 .8 (8 0 .0 , 8 9 .7 ) � 0 .0 0 1 M e n w it h h e m o p h ili a B 1 ,3 1 7 8 3 .6 (8 1 .6 , 8 5 .6 ) 8 3 .6 (8 1 .3 , 8 5 .8 )* 8 4 .8 (7 8 .7 , 9 1 .0 ) 7 8 .9 (6 9 .4 , 8 8 .4 ) 8 7 .8 (7 8 .6 , 9 6 .9 ) 0 .6 e : D a ta in b o ld in d ic a te si gn ifi ca n tl y h ig h e r va lu e s co m p a re d w it h U .S . m e n . Th e C I d o e s n o t in cl u d e th e va lu e fo r th e ge n e ra l m a le p o p u la ti o n a n d , th e re fo re , is si gn ifi ca n tl y d if fe re n t a t th e 5 % le ve l o f si gn ifi ca n ce . n a ge d � 1 8 ye a rs w h o vi si te d U .S . h e m o p h ili a tr e a tm e n t ce n te rs co m p a re d w it h U .S . m e n in th e sa m e a ge gr o u p s b a se d o n U .S . C e n su s d a ta fo r 2 0 0 7 a lu e s fo r te st s o f d if fe re n ce in p e rc e n ta ge s o f h ig h sc h o o l gr a d u a ti o n a cr o ss ra ce gr o u p s fo r h e m o p h ili a p a ti e n ts gn ifi ca n tl y lo w e r va lu e s co m p a re d w it h U .S . m e n n o t a va ila b le Drake et al / Am J Prev Med 2010;38(4S):S489–S494 S491 A chooling or who had education beyond high school, such as 1 year of college, were considered high school graduates. he proportion of subjects who completed high school was alculated for four categories of race and ethnicity (white, lack, Hispanic, and other) and three levels of hemophilia everity. For each category, 95% CIs were calculated. Rates ere also calculated separately for each of three age groups �18 years, 18–24 years, and �25 years). These rates were ompared with those for the general population of men in he same age groups, based on 2007 U.S. Census data.13 raduation rates with CIs outside the bounds of the national ate for each category of age and race or severity were con- idered signifıcantly different at the 95% confıdence level. esults verall, men with hemophilia A had signifıcantly higher igh school graduation rates compared with U.S. men for he three age groups (Table 1). In contrast, those with emophilia B had signifıcantly lower overall graduation ates in two of the three age groups. White men with emophilia A tended to have rates similar to those of U.S. en, and white men with hemophilia B had uniformly ower rates than the U.S. population of men. Black men ith hemophilia tended to have similar high school grad- ation rates as U.S. black men. Hispanic men with hemo- hilia tended to have higher graduation rates than U.S. ispanic men; however, graduation rates for neither lack nor Hispanic men showed variation by hemophilia ype. In general, men with hemophilia A, especially those ith mild disease, had graduation rates similar to or xceeding those of U.S. men (Table 2). However, the attern was strikingly different for men with hemophilia . Although men with mild and severe disease tended to ave graduation rates similar to those of U.S. men, those ith moderate disease had signifıcantly lower graduation ates for all three age groups. Rates across severity levels ithin age groups were signifıcantly different for men ith hemophilia B in the aged �18 years and aged �25 ears groups only. Differences in rates by severity were of orderline signifıcance for men with hemophilia A in the ged �18 years group only. The Amish population in the U.S. has a particularly igh prevalence of hemophilia B owing to a founder ffect. The Amish have a high degree of homogeneity, and hose with hemophilia are primarily affected with mild nd moderate hemophilia B. They traditionally live in ural areas, and most boys in this population stop their ormal education after the 8th grade. To test whether the low graduation rates observed mong moderate hemophilia B patients might result pril 2010 T a A � � � N o t a M e b p -v * S i N A , f m g c d w h m w p e t a T s s g e m t g n t h p D T g r s s l l h r p t a A c p o m s T N a a b * T h a S492 Drake et al / Am J Prev Med 2010;38(4S):S489–S494 rom low high school graduation rates among Amish en, the fırst 3 digits of the ZIP code were used to identify eographic areas in which Amish populations were con- entrated. Graduation rates by severity level and resi- ence in a geographic area were then compared with and ithout Amish residents for men aged �18 years who ad hemophilia B (Table 3). In areas with no Amish residents, graduation rates for en with hemophilia B were similar to those for men ith hemophilia A (Tables 2 and 3). In areas with Amish opulations, graduation rates of men with mild and mod- rate hemophilia B were only 25.7% and 30.2%, respec- ively, well below the graduation rates for men with mild nd moderate hemophilia B in non-Amish communities. he graduation rates for men aged 18–24 years with evere hemophilia B were higher than those for men with evere hemophilia A (Table 2). In addition, when men with hemophilia B living in the eographic areas with high concentrations of Amish were xcluded from analysis, overall graduation rates among able 2. High school graduation rates by age group for U Age (years) Population Mild �18 U.S. men 83.9 Men with hemophilia A 86.8 (85.2, 88. Men with hemophilia B 82.1 (78.6, 85. �18–24 U.S. men 76.5 Men with hemophilia A 81.3 (77.8, 84. Men with hemophilia B 74.3 (65.9, 82. �25 U.S. men 85 Men with hemophilia A 89.2 (87.5, 91. Men with hemophilia B 84.2 (80.5, 87. ote: Boldface indicates significantly higher values compared with U. nd, therefore, is significantly different at the 5% level of significanc Men aged �18 years who visited U.S. hemophilia treatment centers data for 2007. p-values for tests of difference in percentages of high school gradu Significantly lower values compared with U.S. men able 3. High school graduation rates among men with emophilia B (% unless otherwise indicated)a Residence in area with Amish residents n Hemophilia B severity Mild Moderate Severe Yes 169 25.7 30.2 88.9 No 1629 86.6 83.9 84.0 cMen aged �18 years who visited U.S. hemophilia treatment centers en with hemophilia B increased to levels similar to hose among men with hemophilia A for all three age roups (Table 1). Graduation rates for all racial and eth- ic groups, and white men with hemophilia B, increased o rates nearly as high as those among white men with emophilia A; graduation rates among black and His- anic men with hemophilia B remained unchanged. iscussion his is a large nationwide study comparing high school raduation rates of men with hemophilia with graduation ates for the general U.S. population of men. The results uggest that men with hemophilia A graduate from high chool at a similar or higher rate than the national popu- ation of men. Studies conducted 10 years ago showed ower academic performance levels among children with emophilia. Since that time, the recommended treatment egimen has changed from on-demand therapy to pro- hylactic therapy that prevents bleeding episodes and husdecreasesdayslostfromschool.Presumably,improved ttendanceinschoolcontributestoahighergraduationrate. ll participants in this study attended federally supported omprehensive HTCs, where they received multidisci- linary care.14–16 The focus of this care addresses not nly medical treatment, but also psychosocial develop- ent of chronically ill patients, notably children with pecial healthcare needs. During childhood, a key priority of the hemophilia en and for men with hemophiliaa ophilia severity (% [95% CI]) p-valuebModerate Severe 83.9 83.9 85.5 (83.5, 87.6) 84.2 (83.0, 85.5) 0.053 74.5 (71.2, 77.9)* 84.1 (81.3, 86.9) �0.001 76.5 76.5 79.9 (75.9, 83.9) 79.4 (77.1, 81.6) 0.7 65.7 (59.0, 72.3)* 72.6 (66.8, 78.4) 0.2 85 85 88.6 (86.3, 90.8) 87.3 (85.9, 88.7) 0.2 77.8 (74.1, 81.5)* 89.6 (86.8, 92.4) �0.001 n. The CI does not include the value for the general male population pared with U.S. men in the same age groups based on U.S. Census across levels of disease severity in hemophilia patients .S. m Hem 5) 5) 8) 6) 0) 9) S. me e. com ation enter partnership with the family is to maximize the www.ajpm-online.net a a w w e b v a c r p c s a r c a f g H S r U t n a m c e r H g t i c U r t t c c r s d w i p a g g s t i H t t t g a d N t R 1 1 1 Drake et al / Am J Prev Med 2010;38(4S):S489–S494 S493 A ffected child’s participation in school, both in academic nd non-academic arenas. Hemophilia center clinicians ork directly with parents and the schools, particularly hen the child enters a new school. The purpose of these arly interventions is to identify and resolve potential arriers to the child’s regular school attendance. Inter- entions include creating adaptations to reduce tardiness nd absenteeism due to acute or chronic mobility diffı- ulties and to eliminate potentially inappropriate school estrictions (e.g., prohibition from physical education). The ongoing coordinated involvement of the hemo- hilia center team, usually beginning at the child’s birth, an establish a pattern of assisting the family in under- tanding the importance of reducing barriers to school ttendance and, beginning in primary school, assisting in educing those barriers. As the child ages, the team fo- uses on assisting the child and family in transitioning to dult health care, work, and independence; this step ful- ılls Healthy People 2010 National Health Objectives and oals of the Division of Services for Children with Special ealth Care needs, a division of the Health Resources and ervices Administration’s Maternal and Child Health Bu- eau, a federal agency that provides grant support for the .S. Hemophilia Center network.15 Hemophilia center eams encourage adolescents to pursue careers that do ot require extensive manual labor; such work is inadvis- ble for men with hemophilia. Because careers without anual labor tend to require higher education, the staff ounsels adolescents to remain in school; this ongoing ncouragement may be a factor in the higher graduation ates among children with hemophilia, especially among ispanics and blacks who have a high dropout rate in the eneral population. This study is limited because it is a descriptive analysis hat did not control for factors related to SES in compar- sons of patients with hemophilia, especially those of ra- ial and ethnic groups such as blacks and Hispanics, with .S. men. For example, we know that poverty is a major isk factor for poor academic achievement. Thus, a po- ential for bias exists and may explain the higher gradua- ion rates for blacks and Hispanics in the UDC data ompared with the general population of men in the ensus. Geography may also play a role in the study esults. Additionally, we cannot directly compare the re- ults with those of previously cited studies that used aca- emic performance measures, because the outcome here as high school graduation rates, which are not necessar- ly a measure of academic performance. The comprehensive-care, multidisciplinary team ap- roach of the federally supported HTCs may be associ- ted with the higher-than-expected rates of high school raduation among the study population. Advocacy roups for other chronic diseases and for children with pril 2010 pecial healthcare needs are moving toward adoption of he comprehensive care model.16 Because all men partic- pating in the UDC surveillance study were seen at an TC, whether adolescents with hemophilia not seen at he HTCs also have a higher high school graduation rate han average is unknown. Further research is warranted o determine whether differences exist in high school raduation rates among HTCs in the national network nd, if so, to identify factors contributing to those ifferences. o fınancial disclosures were reported by the authors of his paper. eferences 1. Bergman M. U.S. Census Bureau. College degree nearly dou- bles annual earnings, Census Bureau reports [press release]. Washington DC: 2005 March 28. 2. Cohen RA, Martinez ME, Free HL. Health insurance coverage: early release of estimates from the National Health Interview Survey 2007. 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Curr Sci 2003;2:395– 401. 6. Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidis- ciplinary care for individuals in the U.S. with genetic disorders. 05;95(11):1910–6. Pediatrics 2009;123(1):407–12. Did you know? You can search over 500 top health sciences journals online, including MEDLINE, via the AJPM website. Visit www.ajpm-online.net today! www.ajpm-online.net http://www.census.gov/population/www/socdemo/education/cps2007.html http://www.census.gov/population/www/socdemo/education/cps2007.html High School Completion Rates Among Men with Hemophilia Introduction Methods Results Discussion References