Awareness among parents of children with thalassemia major

Fehmina Arif1, Jabeen Fayyaz, Ahmer Hamid

  • 1Paediatric Unit 1, Dow University of Health Sciences, Civil Hospital, Karachi, Pakistan.

Insights

Parental awareness of thalassaemia major (TM) is inadequate, with low knowledge of disease transmission, screening, and treatment. Education is crucial for parents of children with TM and the general public.

Area of Science:

  • Pediatrics
  • Genetics
  • Public Health

Background:

  • Thalassaemia major (TM) is a significant inherited blood disorder requiring lifelong management.
  • Parental understanding of TM is critical for effective disease management and prevention of transmission.

Purpose of the Study:

  • To assess the level of awareness among parents of children diagnosed with thalassaemia major.
  • To identify knowledge gaps regarding disease transmission, screening, and treatment options.

Main Methods:

  • A cross-sectional study was conducted at a Paediatric OPD, interviewing 120 parents of children with TM.
  • Data was collected via a pre-designed questionnaire covering disease duration, blood screening, transmission, prevention, and treatment awareness.

Main Results:

  • Only 15.8% of parents understood the importance of blood screening.
  • Awareness of desferrioxamine (desferrol) was present in 55%, but adequate use was only 10.9%.
  • A mere 15% knew TM is inherited, with low rates of family screening (5.8%) and antenatal diagnosis (5%).

Conclusions:

  • Parental awareness regarding thalassaemia major is significantly inadequate.
  • There is a pressing need to sensitize the general public and parents of children with TM.
  • Targeted educational interventions are required to improve knowledge and management of TM.
Abstract

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