Education and employment status of children and adults with thalassemia in North America.
BACKGROUND
Advances in the management of thalassemia have resulted in increased life expectancy and new challenges. We conducted the first survey of education and employment status of people with thalassemia in North America.


METHODS
A total of 633 patients (349 adults and 284 school age children) enrolled in the Thalassemia Clinical Research Network (TCRN) registry in Canada and the U.S. were included in the data analysis. Predictors considered for analysis were age, gender, race/ethnicity, site of treatment (Canada vs. United States), transfusion and chelation status, serum ferritin, and clinical complications.


RESULTS
Seventy percent of adults were employed of which 67% reported working full-time. Sixty percent had a college degree and 14% had achieved some post-college education. Eighty-two percent of school age children were at expected grade level. In a multivariate analysis for adults, Whites (OR = 2.76, 95% CI: 1.50-5.06) were more likely to be employed compared to Asians. Higher education in adults was associated with older age (OR = 1.67, 95% CI: 1.29-2.15), female gender (OR = 2.08, 95% CI: 1.32-3.23) and absence of lung disease (OR = 14.3, 95% CI: 2.04-100). Younger children (OR = 5.7 for 10-year increments, 95% CI: 2.0-16.7) and Canadian patients (OR = 5.6, 95% CI: 1.5-20) were more likely to be at the expected education level. Neither transfusion nor chelation was associated with lower employment or educational achievement.


CONCLUSIONS
Individuals with thalassemia in North America can achieve higher education; however, full-time employment remains a problem. Transfusion and chelation do not affect employment or education status of this patient population.
Pakbaz
Zahra
Z
Hematology Oncology, Children's Hospital and Research Center Oakland, Oakland, California 94609, USA. zpakbaz@yahoo.com
Treadwell
Marsha
M
Kim
Hae-Young
HY
Trachtenberg
Felicia
F
Parmar
Nagina
N
Kwiatkowski
Janet L
JL
Cunningham
Melody J
MJ
Martin
Marie
M
Sweeters
Nancy
N
Neufeld
Ellis J
EJ
Giardina
Patricia J
PJ
Olivieri
Nancy
N
Yamashita
Robert C
RC
Vichinsky
Elliott
E
D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D002675:Child, Preschool; D004522:Educational Status; D004651:Employment; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D013789:Thalassemia; D014481:United States; D055815:Young Adult