Reproductive health in individuals with homozygous beta-thalassemia: knowledge, attitudes, and behavior.

OBJECTIVE To review the reproductive health knowledge, attitudes, and behaviors of persons with homozygous beta-thalassemia. DESIGN Case-control study. SETTING Patients treated at a tertiary hospital and community-based healthy controls. PARTICIPANT(S) One hundred and thirty persons, 16 years of age or older, who had homozygous beta-thalassemia and were attending hospital for regular blood transfusion, and 99 demographically matched persons without thalassemia. ASSESSMENT TOOL: Reproductive health questionnaire. RESULT(S) 104 (80%) persons with homozygous beta-thalassemia completed the questionnaire and were compared with 99 controls. Persons with homozygous beta-thalassemia were as likely as healthy peers to be in a relationship, employed full-time, sexually active, and using contraception and to have had children. Hypogonadotrophic hypogonadism was present in 55 (52.8%) patients, 46 (83.6%) of whom were compliant with hormone replacement therapy. Understanding of genetics and reproductive potential was suboptimal among persons with homozygous beta-thalassemia, and this group had a higher rate of unplanned pregnancy. CONCLUSION(S) This study suggests that with optimal therapy, most young adults with homozygous beta-thalassemia can achieve reproductive, sexual, and social experiences similar to those of their healthy peers.