Health status in women with Turner syndrome: a questionnaire study on health status, education, work participation and aspects of sexual functioning

P>Context Turner syndrome (TS) is a complex medical condition with specific cognitive and psychosocial characteristics and frequent medical morbidity. Few studies have investigated the influence this has on health status, education and ability to work. Objective To explore health status, level of education, work participation, medical conditions, physical activity, satisfaction with life and aspects of sexual functioning in adult TS women and compare with a matched control group. Design A questionnaire was sent to 168 adult women with TS > 18 years registered in a database of Frambu Resource Centre for Rare Disorders and The TS Association in Norway. We assessed health status with Short Form 36, education with Norwegian Standard Classification of Education, and employment with The General Nordic Questionnaire. Life satisfaction was measured with LiSat-9, and questions on psychological strain during life phases were included. Results Eighty women with TS (34 center dot 0 +/- 11 center dot 7 years) and 214 controls (32 center dot 9 +/- 10 center dot 6) responded. The TS group reported significantly more health problems and impaired health status in the two subscales "physical functioning" and "general health" (P < 0 center dot 001). Level of education and work participation was similar among TS and controls. TS moved away from their parents' home later than controls (20 center dot 4 +/- 4 center dot 0 vs. 18 center dot 7 +/- 2 center dot 1, P = 0 center dot 001). Age at sexual debut differed significantly (21 center dot 2 +/- 4 center dot 3 vs. 17 center dot 3 +/- 2 center dot 4 years, P < 0 center dot 001). Conclusion TS attains the same level of education and level of employment as controls, they report more frequent occurrence of medical conditions, but scored lower on only two subscales in the SF-36. Despite considerable medical morbidity, TS seem to cope well with life.