64. Gaps in Reproductive Health Education for Myelomeningocele Patients

Background Despite patients reporting a desire for reproductive health education, research has shown that myelomeningocele patients rarely receive information about sexual and reproductive health. Patients not only want general reproductive health education, they also want education about limitations that are specific to their level of disability. Prior research lacks a clear understanding of the specific reproductive and sexual health topics currently covered by providers. With this gap in knowledge, patients are left with inadequate reproductive health education. The objective of this study was to evaluate the existing reproductive health education and reproductive health needs among patients with myelomeningocele. Methods All English-speaking patients age 12 or older with a myelomeningocele clinic visit at a tertiary children's hospital between October 2019 and September 2020 were surveyed. Parents assisted with survey completion when necessary. The survey response rate was 54%. The survey asked patients which reproductive health topics had been covered by a medical provider during any of their clinic visits and patients were offered a referral to a reproductive healthcare provider (RHP). Results In total, 67 surveys were completed by patients of the myelomeningocele clinic. A majority of patients were female (58%) and white (83%), and the median age was 18.5 (Range: 12, 50). Menses were discussed at a rate of 85% in females. Few patients had discussions with a provider about their fertility (42%), sexuality (37%), risk of sexually transmitted infections (45%), or had an existing relationship with a RHP (54%). Differences by sex were observed in contraception conversations (54% for females and 25% of males, p for difference Conclusions Overall, patients in the myelomeningocele clinic have a reported low rate of education on basic sexual and reproductive healthcare topics. The lack of consistent sexual and reproductive healthcare education across the patients supports the need for providers to re-evaluate how and when these topics are being discussed with patients and families. Establishing care with an RHP should be standardized in this population and reproductive healthcare should be considered a part of comprehensive care in all patients, regardless of disabilities.