Women’s health guidelines for the care of people with spina bifida
Women and girls with spina bifida have specific health care concerns. It is essential that they, and their health care providers have access to information to help them make healthy choices throughout their lifespan. This article aims to address key aspects of health pertinent to girls and women with spina bifida and outlines the SB Women’s Health Guidelines for the Care of People with Spina Bifida. Further research into this area is needed.
Women and girls with spina bifida have specific needs and concerns, especially in the context of puberty, sexuality, pregnancy and childbirth, and menopause. Throughout their lifetime, every woman and girl’s body undergoes multiple changes which are further impacted by spina bifida.
Girls with spina bifida may go through puberty early, and will need information and support during this process. Women with spina bifida may have unique health concerns regarding their reproductive health, such as structural anomalies of the reproductive tract (for example, a bicornuate uterus may be found on exam or ultrasound). Changes to the hips and spine may require special attention to positioning during pelvic examinations and birth. More information is still needed regarding sexual response in women with spina bifida. Many factors may affect a woman’s ability to position herself during sexual activity, including level of mobility, respiratory function, history of osteoporosis and fracture risk .
Many with physical disabilities, including those with spina bifida, choose to become pregnant [2, 3]. However this comes with specific concerns, such as preterm birth and changes in a woman’s bowel, bladder and mobility. Choices surrounding birth may be complex in some individuals. Understanding how pregnancy will affect one’s current state of health and quality of life is critical to the ongoing health of a woman with Spina Bifida.
|Age group||Clinical questions|
|6–12 years 11 months||
|13–17 years 11 months||
Since menopause can cause vasomotor symptoms and changes in vaginal and bladder health, women may benefit from both lifestyle and medical management . Health screening programs such as pap smears and mammograms are important for all individuals. This guideline aims to address many of the main health concerns specific to women with spina bifida, and acknowledges that since the original publication there may have been further advances in this field .
2.Guideline goals and outcomes
The goals of the Women’s Health Guidelines were both practical and aspirational.
Provide accurate information to women with spina bifida about its impact on pregnancy and the impact of pregnancy on them.
Help women with spina bifida maximize sexual functioning.
Understand menopause management options for women with spina bifida
The methodology for these guidelines has been published by Dicianno et al. . The development of this guideline utilized an international expert team and systematic review of the literature. Clinical questions developed through this process are shown in Table 1. In scenarios where the evidence was limited, recommendations were based on the consensus of expert opinion. The source of the final version of these guidelines is the Spina Bifida Association Guidelines for the Care of People with Spina Bifida 2018 .
|6–12 years11 months||
|13–17 years11 months||
|[5, 8, 27, 28]|
|18 yearsPart A: gynecological health||
|[1, 5, 8, 9, 10, 11, 12, 27, 28, 29, 30, 31] Clinical consensus|
|18 years Part B: Antenatal care||
Table 2, continued
|18 years Part B: Antenatal care||
|18 years Part C: Care surrounding Birth||
Table 2, continued
|18 years Part C: Care surrounding Birth||
|18 years Part D: Breastfeeding||
Table 2, continued
The Women’s Health Guidelines for the Care of People with Spina Bifida are shown in Table 2. Girls with spina bifida are more likely to go through puberty early , and will need information and support during this process. Contraception counselling may require the assessment of special circumstances, such as latex allergy, medication usage, and decreased bone mineral density, and thus individuals may benefit from consulting a gynecologist [8, 9, 10, 11]. Health maintenance programs such as pap smears and mammograms should be encouraged and facilitated. Sexual function may be impacted by decreased pelvic sensation and challenges with orgasm. A sexologist may be helpful for some individuals .
Women with spina bifida may benefit from consultation with an obstetrician experienced with high-risk pregnancies to discuss the increased risk of having a baby with a neural tube defect , as well as an increased risk of preterm birth [14, 15]. Women should be strongly encouraged to supplement with 4 mg of folic acid starting at least 1 month prior to conception, and ideally 3 months prior to conception to decrease the risk of their baby having an open neural tube defect . Pregnancy care should be individualized depending on the way each woman is affected by spina bifida. Changes in pulmonary function, mobility, pain, falls [15, 16, 17], bowel and bladder function [17, 18, 19], seizures , shunt function  and kidney function [21, 22, 23], may impact women differently during pregnancy. Although many may be good candidates for vaginal birth, a cesarean birth may be optimal for some individuals, a decision that should be made with input from an interdisciplinary team when warranted [15, 19, 23, 24, 25].
There is no specific information on breastfeeding in women with spina bifida, however those who choose to breastfeed should be encouraged to do so after reviewing their medications  and may wish the support of a lactation consultant. There is no specific information about management of vasomotor symptoms during menopause in women with spina bifida, however consultation with an expert in menopausal management will help take into consideration the severity of symptoms, bone mineral density, risk of deep vein thrombosis and other symptoms such as depression . There is no specific data on thromboprophylaxis in women with spina bifida, however decision-making should be made on a case-by case basis for those with limited mobility or who use wheelchairs.
This guideline was developed to help those who provide women’s health services to individuals with spina bifida. Due to the diverse ways spina bifida affects each person, the concerns surrounding healthy sexual function, pregnancy, and menopausal symptoms management will be quite individualized. While performing this review, it became evident that there are limited data and multiple research gaps in the field of health of women with spina bifida. Recommendations in these areas were made based on the current small body of evidence, expert opinion, and when appropriate, extrapolating from similar groups. Screening for sexually transmitted infections, cervical cancer and breast cancer should be in concordance with local guidelines; however, it is important to recognize that women with physical disabilities face a number of systemic barriers when trying to access healthcare, resulting in decreased rates of screening.
The creation of this guideline highlighted clinically important research gaps and the need for further study. There is no information available on the effect of pregnancy on future continence or other key indicators of urogenital health in women with spina bifida. Preterm birth is an important outcome due to its significant impact on a child’s health. There appears to be an increased risk of preterm birth in women with spina bifida, however more data is needed to better understand the incidence and risk factors for preterm birth in those with spina bifida. Likewise, the incidence of other important maternal outcomes including gestational diabetes, preeclampsia, and postpartum complications are unknown. There is no specific literature on breastfeeding in the context of spina bifida. Maximizing sexual functioning and management of menopausal symptoms, specifically for women with spina bifida, also requires further research. It is hoped that increased awareness of the seemingly complex overlap between women’s health and spina bifida will result in increased research into this field, improving women’s ability to make informed decisions about their health, and ultimately improved quality of life.
This edition of the Journal of Pediatric Rehabilitation Medicine includes manuscripts based on the most recent “Guidelines For the Care of People with Spina Bifida,” developed by the Spina Bifida Association. Thank you to the Spina Bifida Association for allowing the guidelines to be published in this forum and making them Open Access.
The Spina Bifida Association has already embarked on a systematic process for reviewing and updating the guidelines. Future guidelines updates will be made available as they are completed.
• Timothy J. Brei, MD. Spina Bifida Association Medical Director; Developmental Pediatrician, Professor, Seattle Children’s Hospital.
• Sara Strewe, MPA, Spina Bifida Association President & Chief Executive Officer.
• Patricia Beierwaites, DPN, CPNP, Guideline Steering Committee Co-Chair; Assistant Professor, Nursing, Minnesota State University, Mankato.
• Brad E. Dicianno, MD, Guideline Steering Committee Co-Chair; Associate Medical Director and Chair of Spina Bifida Association’s Professional Advisory Council; Associate Professor, Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine.
• Nienke Dosa MD, MPH, Guideline Steering Committee Co-Chair; Upstate Foundation Professor of Child Health Policy; SUNY Upstate Medical University.
• Lisa Raman, RN, MScANP, Med, former Spina Bifida Association Director, Patient and Clinical Services.
• Jerome B. Chelliah, MD, MPH, Johns Hopkins Bloomberg School of Public Health.
• Julie Bolen, PhD, MPH, Lead Health Scientist, Rare Disorders Health Outcomes Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.
• Adrienne Heron, PhD Behavioral Scientist, Intervention Research Team, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention.
• Judy Thibadeau, RN, MN. Spina Bifida Association Director, Research and Services; former Health Scientist, National Spina Bifida Program, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.
The development of these Guidelines was supported in part by Cooperative Agreement UO1DD001077, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official view of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
Conflict of interest
Anne Berndl has received funding for a project entitled “Spinal Cord Injury and Urogenital Health” from the Ontario Neurotrauma foundation. Ashely Waddington has received research funding from Bayer and Consulting Fees from Bayer and Merck. Margaret Nosek has no conflicts of interest to report.
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