title: Awareness among parents of β-thalassemia major patients, regarding prenatal diagnosis and premarital screening.
abstract: OBJECTIVE
  To assess the knowledge among parents of thalassemia major patients about prenatal diagnosis, premarital screening for carrier detection and impact of consanguineous marriage on disease transmission.
  
  
  METHODS
  Descriptive study.
  
  
  METHODS
  The Thalassemia Centre, Sir Ganga Ram Hospital, Lahore, from July to September 2009.
  
  
  METHODS
  One hundred and fifteen parents of β-thalassemia major patients were enrolled in this study. A questionnaire was developed and parents were interviewed to assess their knowledge about preventive measures against thalassemia major. Parents of patients with all other types of blood disorder were excluded from the study.
  
  
  RESULTS
  There were 74 male (64.3%) and 41 female (35.7) patients with mean age of 9.5 ± 5.1 years. Eighty-eight patients (76.5%) were accompanied by mothers and the rest by their fathers. Seventy-four parents (32.1%) were illiterate; among the literates only 7 were highly educated (3%). Ninety-four couples (81.7%) had consanguineous marriage. Fiftytwo parents (44.6%) knew that thalassemia is an inherited disorder. Thirty-eight (33%) had heard about the test for detecting thalassemia carrier. Premarital screening and prenatal diagnosis was known to 97 (84.3%) and 88 (76.5%) parents respectively. Ninety-nine parents (86.1%) knew about the termination of pregnancy on positive prenatal test but only 69 considered it acceptable religiously (60%). Major source of information to the parents were doctors.
  
  
  CONCLUSIONS
  Parental knowledge about thalassemia and its preventive measures was inadequate; this requires intervention in the form of public health education programs concentrating on high risk/targeted population.
authors.affiliation: Department of Paediatrics, Fatima Jinnah Medical College, Sir Ganga Ram Hospital, Lahore. fouziahasnain@hotmail.com
authors.forename: Fouzia
authors.initials: F
authors.lastname: Ishaq
authors.forename: Hasnain
authors.initials: H
authors.lastname: Abid
authors.forename: Farkhanda
authors.initials: F
authors.lastname: Kokab
authors.forename: Adil
authors.initials: A
authors.lastname: Akhtar
authors.forename: Shahid
authors.initials: S
authors.lastname: Mahmood
mesh_terms: D000293:Adolescent; D000328:Adult; D001364:Awareness; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006579:Heterozygote; D006801:Humans; D015994:Incidence; D008297:Male; D008875:Middle Aged; D010154:Pakistan / Q000453:epidemiology; D010290:Parents; D011247:Pregnancy; D011250:Pregnancy Complications, Hematologic / Q000175:diagnosis* / Q000453:epidemiology / Q000235:genetics; D011291:Premarital Examinations / Q000379:methods*; D011296:Prenatal Diagnosis; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D017086:beta-Thalassemia / Q000175:diagnosis* / Q000453:epidemiology / Q000235:genetics