Sexual and reproductive health education for patients with myelomeningocele

Abstract

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.

Editorial Comment

“…2 Yet, people living with SB report uncommonly having such discussions, despite a desire to do so. 3 Though several potential barriers to conversations exist, such as clinician discomfort, individuals with disabilities stress the importance of developing trusting therapeutic relationships and beginning conversations around sexual health early in life. 4 Pediatric urologists play a significant role in the care of youth with SB and do often develop trusting relationships.…”

“…The literature is fairly sparse so far in this regard, but more studies are being published lately on this topic, including those cited by this study, 1 as well as other recent articles. 2,3…”

“…The literature is fairly sparse so far in this regard, but more studies are being published lately on this topic, including those cited by this study, 1 as well as other recent articles. 2,3 The International Index of Erectile Function (IIEF) is a widely available assessment tool for measuring male sexual function and is commonly used in the treatment of men with erection dysfunction. As the authors note, however, the IIEF may be inadequate for use in adult SB males due to their unique physical and psychosocial circumstances compared to the subjects on whom the index was developed.…”

Advancing sexual health care in spina bifida multidisciplinary clinics and beyond

“…Despite being essential components of high‐quality patient‐centered care, sexual health care and education are often inadequately provided to people with disabilities including those with spina bifida 1–3 . The reasons for this are many and include parental and provider discomfort, lack of provider knowledge of disability‐specific sexual health needs of their patients, limited time in clinical encounters, the expectation that someone else will provide sexual health services, the need to focus on urgent clinical problems, and the misperceptions that individuals with disabilities are asexual 2,3 . All of these barriers are amenable to change.…”

“…Clinicians involved in the care of people with spina bifida, whether in a multidisciplinary clinic such as the site of the research conducted by Lutz et al 3 or in outpatient clinical settings, should consider the sexual health needs of their patients just as they consider other health needs. The World Health Organization, American Academy of Pediatrics, and Spina Bifida Association all promote access to culturally responsive sexual health care 2,4,5 .…”