Do thalassaemic patients, their parents and caregivers support termination of pregnancy as a method for thalassaemia prevention?

Abstract

INTRODUCTION AND OBJECTIVES: The only proven way to prevent thalassaemia, the commonest monogenic disease in Sri Lanka, is premarital and ante natal counselling followed by pre-natal diagnosis (PND) and termination of affected fetuses. Termination of pregnancy (TOP) of a thalassaemic fetus is illegal in Sri Lanka. This study assesses the attitudes towards termination of thalassaemic fetuses among the patients themselves, their immediate family members and hospital staff. METHODS: A single operator administered a pre-formed questionnaire to test the knowledge and attitudes towards TOP among patients, parents, immediate family members and hospital staff associated with the thalassaemia unit; over a two month period from Is' of March 2010, at the Thalassaemia Unit, NCTH, Ragama. RESULTS: A total of 24 adult patients with thalassaemia major (TM) and 15 with thalassaemia intermedia (TIM) 39 parents and 25 hospital staff were interviewed. 39.1% of TMs, 60% TIMs, 60% hospital staff, 54.5% parents were aware of PND. 78.8% of TMs, 87% TIMs, 60% hospital staff, 85.3% parents knew that abortion of a thalassaemic fetus was illegal. Only 39.1% of TM supported TOP, if thalassaemia was diagnosed antenatally whilst 73.3% TIMs, 80% hospital staff and 88.57% parents were supportive (pO.OQl). 78.2% of TMs, 100% in all other groups support premarital screening and making partner screening compulsory. CONCLUSIONS: Though there is strong support for TOP from parents and hospital staff, this is not so with patients with TM. However partner selection prior to marriage seems to have more uniform support.