A team of investigators has found that women with Down Syndrome received gynecologic care at lower-than-recommended rates and at substantially lower rates than other forms of health care. The investigators have called for efforts to improve gynecologic care for this vulnerable population.
The study, based upon findings from a National Registry, appeared in Obstetrics & Gynecology, the journal of the American College of Obstetricians and Gynecologists (ACOG). The investigators’ goal was to estimate receipt of recommended gynecologic care, including cancer screening and menstrual care, among women with Down syndrome in the US. For the research, investigators used patient-reported data from DS-Connect, which is a national registry of individuals with Down syndrome. It is a centralized national registry funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the investigators said.
Down syndrome is one of the most common identified causes of intellectual disability in the U.S., the investigators reported. Women make up 40% of the population of those with the syndrome, also known as trisomy-21. The investigators noted that over the past two decades, the lifespan nearly has doubled for those with Down syndrome. This further underscores the need for patient-centered gynecologic care that takes into consideration the full lifetime needs of an individual.
“Our first outcome was receipt of all gynecologic components of ACOG-recommended, age-appropriate well-woman care among women with Down syndrome at least once during their lifetimes,” the investigators wrote.
“We then measured lifetime receipt of specific components of recommended well-woman care: any gynecologic examination (for women age 18 years and older), Pap test (age 21 years or older), or mammography (age 40 years or older).We also measured breast examination by self or family member (age 18 years or older), although we did not include it in our estimate of guideline-adherent well-woman care because the breast self-examination was removed from ACOG guidelines during the study period.
We compared receipt of recommended well-woman care to receipt of non-gynecologic care recommended for individuals with Down Syndrome, including physical examinations, vision, hearing, and dental care.”
Their second outcome was the receipt of menstrual regulation treatments, such as oral contraceptive pills, Depo-Provera injections, and intrauterine devices, they said. “The questionnaire distinguishes between use of contraceptives for intended menstrual regulation compared with pregnancy prevention,” they wrote. “We do not report use of contraceptives for pregnancy prevention, given the small number of respondents to this component of the questionnaire. We also characterized the age at menarche, regularity, and length of menstrual cycle.”
The results included the following: Of the 3,441 U.S. individuals enrolled in DS-Connect from 2013 to 2019, 1,625 were women, and 70 women (4% of female enrollees) had complete responses to the questionnaire on women’s health outcomes. The mean age of study participants was 33 years (95% CI, 30-36; range 19-74). The majority were White (94%; 95% CI, 89-100).
Twenty-one percent had a history of physical abuse (95% CI, 12-31), and 24% (95% CI, 14-35) had experienced unwanted sexual advances. Six percent had potential or confirmed sexually activity (95% CI, 0-12) with no reported history of sexually transmitted infections. Fourteen percent of participants were postmenopausal (95% CI, 6-23) with a mean age of menopause of 40 (95% CI, 34-46).
Only 26% of age-appropriate women with Down syndrome reported ever having a Pap test, and 50% reported ever receiving a mammogram, the investigators wrote. By contrast, 89% of women with Down syndrome had received recommended non-gynecologic preventive care. Comparatively, according to the National Health Interview Survey, 93% of US women aged 21-65 years have ever received a Pap test, and 95% of US women aged 50-74 years have ever received a mammogram.
“Our research demonstrates considerable disparity in women with Down syndrome receiving the recommended preventative cancer screenings, on par with findings in women with other intellectual disabilities,” the investigators wrote.
1. Smith AJB, Applebaum J, Tanner EJ, Capone GT. Gynecologic Care in Women With Down Syndrome: Findings From a National Registry. Obstet Gynecol. 2020 Sep;136(3):518-523. doi: 10.1097/AOG.0000000000003997. PMID: 32769650.