title: The Changing Epidemiology of Pediatric Hemoglobinopathy Patients in Northern Alberta, Canada.
abstract: BACKGROUND
  Hemoglobinopathies are associated with significant morbidity and mortality. Accurate epidemiologic data reflecting the number of hemoglobinopathy patients are lacking in Canada. Immigration patterns are shifting such that regions where these diseases were rare are seeing a rapid population expansion, revealing a gap in the health care system and the need for a public health response.
  
  
  METHODS
  To understand the epidemiology of pediatric hemoglobinopathy patients given the provincial population growth and immigration patterns, a retrospective chart review was conducted at the Stollery Children's Hospital from January 2004 to July 2014.
  
  
  RESULTS
  A total of 88% of patients had sickle cell disease; 55% of patients were Canadian born and 63% of families originated from Africa. There was a 3.5-fold increase in patient numbers with acceleration in patient accrual over the study period and a delay in diagnosis in 70% of patients. There was a significant increase in the number of hospitalizations over the study period. Thirteen percent required at least 1 exchange transfusion, 16% received chronic transfusions, and 30% of patients developed at least 1 severe complication related to their diagnosis.
  
  
  CONCLUSIONS
  It is imperative to demonstrate the growing hemoglobinopathy population and changing health care requirements to advocate for appropriate resources, educate health care providers, and increase awareness.
authors.affiliation: Stollery Children's Hospital, University of Alberta, Edmonton, AB, Canada.
authors.forename: Catherine
authors.initials: C
authors.lastname: Corriveau-Bourque
authors.forename: Aisha A K
authors.initials: AA
authors.lastname: Bruce
mesh_terms: D056586:Acute Chest Syndrome / Q000453:epidemiology / Q000209:etiology; D000293:Adolescent; D000349:Africa / Q000208:ethnology; D000416:Alberta / Q000453:epidemiology; D000755:Anemia, Sickle Cell / Q000150:complications / Q000453:epidemiology* / Q000208:ethnology / Q000628:therapy; D001208:Asia / Q000208:ethnology; D001803:Blood Transfusion / Q000706:statistics & numerical data; D017691:Caribbean Region / Q000208:ethnology; D002648:Child; D002675:Child, Preschool; D054242:Emigrants and Immigrants / Q000706:statistics & numerical data; D005260:Female; D005955:Glucosephosphate Dehydrogenase Deficiency / Q000453:epidemiology / Q000208:ethnology; D006295:Health Resources / Q000600:supply & distribution / Q000639:trends; D006301:Health Services Needs and Demand; D006405:Hematology / Q000458:organization & administration; D006760:Hospitalization / Q000706:statistics & numerical data; D006776:Hospitals, Pediatric / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D019190:Iron Overload / Q000453:epidemiology / Q000209:etiology; D008297:Male; D009017:Morbidity / Q000639:trends; D010044:Outpatient Clinics, Hospital / Q000706:statistics & numerical data; D012189:Retrospective Studies; D020521:Stroke / Q000453:epidemiology / Q000209:etiology; D013789:Thalassemia / Q000150:complications / Q000453:epidemiology* / Q000208:ethnology / Q000628:therapy; D065227:Transfusion Reaction