News Release

Teen girls with common hormonal disorder more concerned about fertility than peers

Peer-Reviewed Publication

Johns Hopkins Medicine

A new study of teenage girls with menstrual problems and other hormone-related symptoms finds they are far more worried about their future fertility that their healthy age-mates and need more health care and counseling than they are getting.

The findings, by researchers from the Johns Hopkins Children's Center and Harvard University, were published in the February issue of the Journal of Pediatric and Adolescent Gynecology.

Investigators surveyed 187 healthy teen girls and 97 teens with polycystic ovary syndrome (PCOS), a common hormonal disorder affecting an estimated 5 percent to 10 percent of girls and women of childbearing age. PCOS is marked by irregular menstrual cycles, excessive body hair, acne and obesity and is a leading cause of infertility.

Each teen completed quality of life and general health questionnaires that included questions about menstrual cycles, facial and body hair, sexual activity, future pregnancy plans, concerns about fertility, changes in health, mental health, family activities, pain and self-esteem. PCOS patients also were asked about the understanding of their condition, how they felt about it, and any impact it has had on their lives.

Teens with PCOS were more than three times as likely to be concerned about their future fertility as healthy girls. Fertility concerns were also associated with significantly lower scores in 10 of 12 categories on the quality of life questionnaire, particularly in the areas of self-esteem and mental health.

Fifty-four percent of teens with PCOS also reported that their condition has had a negative impact on their lives, specifically in the way it has affected their menstrual cycles, weight and problems with acne. According to lead author Maria E. Trent, M.D., M.P.H., an adolescent medicine specialist at the Johns Hopkins Children's Center, these findings support previous research from a similar population that showed that perception of illness has a critical impact on the quality of life of teens with PCOS.

"Pediatricians must realize that teenage girls with PCOS are very much aware of the potential side effects, including infertility," said Trent. "Counseling from a health provider that addresses their concerns about their future health, may be critical in improving the quality of life for these girls."

In addition to infertility, other complications of PCOS may include diabetes, heart disease and uterine cancer. Treatment, including weight loss and medication such as oral contraceptives, can improve reproductive function and reduce the risk for developing complications.

In the study, concerns over fertility, perceptions of PCOS and clinical severity of illness were not associated with earlier sexual intercourse, Trent said. Healthy teen girls were more than twice as likely to have had sexual intercourse compared to girls with PCOS, but the average age of the first sexual encounter did not differ significantly between either group.

"Although girls with PCOS are less likely to be sexually active, more than 35 percent have had sexual intercourse," said Trent. "These findings underscore the importance of providing ongoing counseling on fertility issues, contraception and sexually transmitted disease prevention in the care of teen girls with PCOS."

This study was supported by the Maternal Child Health Bureau Health Resources and Services Administration, U.S. Department of Health and Human Services and an unrestricted educational grant from Aventis Pharmaceuticals, Inc.

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