RESUMO
AIM: To evaluate the sexual and reproductive health education received by patients with myelomeningocele, the most severe form of spina bifida. METHOD: A survey designed to assess the sexual and reproductive health education given by a healthcare provider to patients with myelomeningocele was offered to all English-speaking patients aged 12 years or older with a myelomeningocele clinic visit. RESULTS: In total, 67 surveys were completed. Menstruation and menstrual management were discussed at a rate of 85% in females. Few patients had discussions with a provider about fertility (42%), sexuality (37%), risk of sexually transmitted infections (45%), or had a relationship with a reproductive healthcare provider (54%). Differences by sex were observed for contraceptive education. The rate of discussions increased with age. A total of 67% of female patients and 33% of male patients requested a referral to a reproductive healthcare provider. INTERPRETATION: Sexual and reproductive health education is part of comprehensive care for all patients and those with disabilities should not be excluded. The lack of consistent education received by patients supports the need for increased attention to this topic. We encourage multidisciplinary myelomeningocele clinics to establish a process for delivering complete and patient-specific sexual and reproductive health education.