Well-woman care and HPV vaccination rates in women with Rett syndrome

Abstract

Background: Lifespan has increased in individuals with Rett syndrome (RTT), but little is currently known about the provision of well-woman care to these individuals.

Objective: To collect data on well-woman examinations and human papillomavirus (HPV) vaccination rates in women with RTT to understand the current state of women's healthcare in individuals with RTT.

Methods: A retrospective cross-sectional chart review and prospective survey of 77 patients with Rett syndrome who were cared for at a single specialty clinic over five years was conducted to collect data on women's health examinations and HPV vaccination rates.

Results: The following percentages represent women with RTT who have met the recommendations of ACOG for well-woman examinations: breast examinations- 40.3%, pelvic examinations- 51.2%, mammograms- 75.0%, external genitourinary examinations -31.6%. Many of these women also had delayed exams. 22.9% of women who were eligible for the HPV vaccine have received it.

Conclusions: Many women with RTT do not undergo well-woman examinations and HPV vaccinations as recommended by ACOG. Since these women are not usually sexually active, many guardians believe the HPV vaccine is unnecessary. However, like other women with disabilities, RTT females are at risk for sexual abuse and disparities in access to women's health services, so these topics should be discussed with caretakers.

Keywords: Developmental disability; HPV vaccine; Rett syndrome; Women’s health.