Knowledge and attitudes towards haemophilia: the family side and role of haemophilia societies.
OBJECTIVE
A pilot study to evaluate the knowledge about haemophilia in the families enrolled in the Lucknow Haemophilia Society (India), and to assess their attitudes towards prenatal diagnosis (PND).


METHODS
A questionnaire to assess the knowledge about haemophilia (questionnaire A) and another questionnaire to assess the attitude towards PND (questionnaire B) were distributed. PND was performed by DNA-based linkage analysis.


RESULTS
There was a positive correlation between the knowledge about the disease and the frequency of attending the monthly meetings of the society. The majority of respondents felt that they would opt for termination of pregnancy if the fetus was affected.


CONCLUSIONS
Haemophilia societies act as strong media in educating affected families. Multiple factors affect the attitude towards PND and abortion of affected fetuses.
Pandey
Gouri Shanker
GS
Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
Panigrahi
Inusha
I
Phadke
Shubha R
SR
Mittal
Balraj
B
D000328:Adult; D005260:Female; D005333:Fetus; D007722:Health Knowledge, Attitudes, Practice; D006467:Hemophilia A / Q000175:diagnosis / Q000517:prevention & control; D006801:Humans; D008297:Male; D011296:Prenatal Diagnosis; D012380:Role; D012657:Self-Help Groups