Health guideline developed for women and girls with spina bifida

A new health guideline has been developed to address the health care concerns of women and girls with spina across their lifespan.

“Reproductive life stages, including puberty, pregnancy, childbirth and menopause, impact women and girls with spina bifida differently,” says Dr. Anne Berndl, maternal fetal medicine specialist at Sunnybrook and lead author of the guideline published in the Journal of Pediatric Rehabilitation Medicine. “Our goal in developing the guideline was to support those who provide women’s health services to individuals with spina bifida.”

The guideline breaks down health considerations by life stage, beginning with puberty. Many girls with spina bifida enter puberty early, and differences in reproductive health continue during childbearing years and beyond.

“Early education around a woman’s sexuality and sexual function are important considerations to empower women to seek the care they need throughout their lifetime. Women and girls with spina bifida would often benefit from seeing a gynecologist or sexologist to ensure healthy sexual function,” adds Dr. Berndl.

Health maintenance programs that screen for sexually transmitted infections, cervical cancer and breast cancer screening should also be a priority for those health care providers caring for women and girls with spina bifida.

“These guidelines seek to address key aspects and unique health concerns pertinent to girls and women with spina bifida and hydrocephalus,” says Shauna Beaudoin, Director, Programs & Information, Hydrocephalus Canada (formerly Spina Bifida and Hydrocephalus Association of Ontario). “The recommendations are a positive step forward in enhancing the lives of girls and women with spina bifida and hydrocephalus throughout their lifespan.”

While the guidelines address detailed considerations, Dr. Berndl cautions that every woman’s care will be quite individualized, and providers should take into consideration that women with physical disabilities face a number of systemic barriers when trying to access health care.

“There is a clear need for further research in a number of areas for women with spina bifida. I hope that increased awareness of the complexities of women’s health and spina bifida will result in increased research. This will ultimately improve women’s ability to make informed decisions about their health and improve their overall quality of life,” adds Dr. Berndl.