40 years later: the health related quality of life of women affected by thalidomide.

OBJECTIVES 40 years ago, the sudden increase of births of babies with a range of severe deformities shocked the world. It was caused by the tranquilizer thalidomide. Women who took the drug in the first trimester of pregnancy gave birth to children with a wide but distinctive range of malformations. Thalidomide claimed more than 10,000 victims worldwide. Those who survived are now reaching middle age. Especially women affected by thalidomide may be at special disadvantage because of combined discrimination based on gender and disability. So far, no study has been published that has investigated their quality of life in health and in health care. METHODS A questionnaire using the WHO QOL-BREF instrument for measuring health-related quality of life was distributed among 166 females impaired by thalidomide. A randomized control group matched by age, sex and area of residence filled out a corresponding questionnaire. RESULTS Women impaired by thalidomide reported significantly lower quality of life in health and health care as compared to their control group. Over a third reported steadily deteriorating conditions, and a statistically significant higher proportion as compared to the controls has already retired from the workforce. They were significantly less frequently married, had fewer children, had less household incomes and were less mobile. However, women impaired by thalidomide are more likely to be satisfied with their safety in daily life, with their physical environment, with their living conditions and with the support they get from their friends. CONCLUSIONS Although there is increasing clinical research on how to use thalidomide as a drug in new therapies, the specific health needs of women impaired by thalidomide are at risk of being neglected.