Health care utilization and perceptions of health among adolescents and adults with Turner syndrome

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Abstract
We surveyed women aged 12 years and older who are members of the Turner Syndrome Society of the United States in regard to their health history, current health status, and health care utilization practices to identify the range of health problems and health care practices in this group. The mean age at diagnosis was 10.8 years, and an endocrinologist (41%) or pediatrician (35%) was most likely to make the initial diagnosis. Individuals over age 35 years were diagnosed with Turner syndrome and begun on estrogen replacement therapy at a significantly older age than those who were in younger age groups. Seventy-five percent of the respondents had required some type of surgical procedure, and 14% had been hospitalized within the previous year. Ninety-four percent of women rated their overall health as good to excellent, while 6% rated it fair to poor. In the 12-17-year age group, 89% of the young women were either currently taking or had previously taken growth hormone. The prevalence of major depressive symptoms was slightly higher than the general population for adolescents but similar to the general population for adults. For adult respondents, ratings of fair to poor health were significantly associated with increased outpatient visits. Growth hormone use was significantly associated with increased visits in the adolescent population. Based on these data, it appears that the clinical care of individuals with Turner syndrome has improved, but that they continue to have relatively high hospitalization rates and utilization of subspecialty services. Despite these health problems, most respondents demonstrated good adjustment as determined by standardized mental health measures.