Reproductive Choices, Pregnancies and Deliveries in Carriers of Hemophilia – Results of the CarrierQOL-Study

Abstract number: P0210

C Wermes, I Wieland, R Eisert, A Ganser

Background:  Carrying an inherited disorder like hemophilia could influence the reproductive choices, the pregnancies, the deliveries, and the quality of life of women.

Methods:  Carriers of hemophilia were asked by a questionnaire about their family planning, pregnancies and deliveries. Quality of life was measured using the WHOQOL-BREF-test.

Results:  164 carriers could be enrolled in the study. Carrier status had been diagnosed at a median age of 27 years (SD 12.0, range 0–62). 124 of them were carriers for hemophilia A (75.6%). 129 women (78.6%) were married of lived close-partnered. 142 carriers had been pregnant, 139 have children. In 23/142 amniocentesis had been performed. 23/142 women aborted, in only two cases because hemophilia had been diagnosed. 21 carriers had other reasons. 142 women had 279 deliveries (birth rate 1.96/mother, 1.7/carrier). 136 of these children were hemophiliacs. In only 59 cases the sex of the child, and in 20 boys the hemophilia had been diagnosed before the delivery started. Sectio cesarean was performed 12 times, in 2 cases because of hemophilia. During 19 deliveries complications in the hemophiliac newborns occurred (bleeding 9 cases). 30 carriers suffered from 42 severe post-partal bleedings. Quality of life of mothers with hemophiliac sons: physical: 78.9 (normal 75.4), psychical: 69.5 (72.5), social relations: 69.2 (71.4), environment: 73.5 (69.7), global 70.6 (66.5).

Conclusion:  Family planning seems not to be influenced by the carrier status. Carriers get no less children and the rate of abortions seems to be lower than expected. Although the domains ‘psychical’ and ‘social relations’ are slightly reduced, the overall quality of life of mothers with hemophiliac sons is comparable to the normal population, possibly due to the good treatment conditions in hemophilia.

Acknowledgement:  We thank V. Aumann, C. Bidlingmaier, C. Escuriola, S. Holzhauer, U. Nowak-Göttl, R. Schneppenheim and U. Schulte-Overberg supporting this study.