title: The effect of spinal cord level on sexual function in the spina bifida population.
abstract: BACKGROUND
  Sexual dysfunction and infertility are prevalent in the spina bifida (SB) population; however, the mechanism of how they affect a person with spina bifida is poorly understood. Additionally, the management of children with spina bifida becomes more difficult as they exit from pediatric institutes.
  
  
  OBJECTIVE
  The present study sought to evaluate sexual health (using validated questionnaires) and fertility in adults with spina bifida and to correlate spinal cord level and ambulatory status with degree of sexual function.
  
  
  METHODS
  After institutional board review approval, 199 adult patients with SB, aged 18 and older and who were followed in one pediatric institution, were identified. Patients who were non-English speaking, cognitively and/or developmentally delayed, or unable to be contacted were excluded. Surveys regarding demographics, sexual health and infertility were mailed to the patients and administered in the clinic with the option to opt-out of the survey. Survey questions regarding sexual health were constructed using validated questionnaires: Female Sexual Function Index (FSFI) for females, and International Index of Erectile Function (IIEF) and Sexual Health Inventory for Men (SHIM) for males. Sexual dysfunction scores were correlated to the patients' spinal level and ambulatory status.
  
  
  RESULTS
  Of the 121 eligible patients, 45 replied, with a response rate of 39%. For females, using a cut-off value of 26.5 for FSFI scoring, 25 out of 28 (89%) had sexual dysfunction. No association was seen between spinal level or ambulatory status and overall FSFI, satisfaction, or desire scores. For males, 10 out of 17 (59%) had severe erectile dysfunction (ED), and one out of 17 (6%) had no ED. No association was seen between ambulatory status and sexual function scores for the males. However, SHIM, satisfaction, and ED scores were higher in males with lower spinal lesions. People with spina bifida of both genders tended to have more severe dysfunction compared to those with sexual dysfunction of other etiologies, except with similar sexual desire scores. Regarding questions on fertility, no participant attempted to have children; thus, there was no infertility reported.
  
  
  CONCLUSIONS
  Few studies have been conducted on sexual health and fertility in adults with SB. Three studies have utilized validated questionnaires and found varying degrees of sexual dysfunction in this subset of patients; however, only one study found sexual activity to be more likely in patients with more caudal levels of neurologic impairment. The present study also showed that SHIM, satisfaction, and ED scores were higher in males with lower spinal lesions. Limitations to this study primarily included the small sample size and low survey response rate.
  
  
  CONCLUSIONS
  Limited information is known about adults with SB, and sexual function and fertility. While expressing sexual desire, adults with SB appear to experience high rates of sexual dysfunction. Fertility rates were inadequately assessed; this was possibly due to the high rate of sexual dysfunction. Sexual health in the SB population is an important component of the myriad of urologic care issues for these people. Due to the disparity in their care after reaching adulthood, it is prudent to follow these patients and understand their pathophysiology as they continue to mature through life.
authors: Children's National Medical Center, 111 Michigan Ave. NW, Washington, DC 20010, USA. Electronic address: noraglee@gmail.com.
authors: N G
authors: NG
authors: Lee
authors: Department of Urology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA. Electronic address: elizabeth.andrews@childrens.harvard.edu.
authors: E
authors: E
authors: Andrews
authors: Department of Urology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA. Electronic address: ilina.rosoklija@childrens.harvard.edu.
authors: I
authors: I
authors: Rosoklija
authors: Department of Urology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA; The Clinical Research Center, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA. Electronic address: tanya.logvinenko@childrens.harvard.edu.
authors: T
authors: T
authors: Logvinenko
authors: Department of Urology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA. Electronic address: ekjohns@gmail.com.
authors: E K
authors: EK
authors: Johnson
authors: Boston University Medical Center, 725 Harrison Ave, Suite 3B, Boston, MA 02118, USA. Electronic address: robert.oates@bmc.org.
authors: R D
authors: RD
authors: Oates
authors: Department of Urology, Boston Children's Hospital, 300 Longwood Ave, Boston, MA 02115, USA. Electronic address: carlos.estrada@childrens.harvard.edu.
authors: C R
authors: CR
authors: Estrada
mesh_terms: D000293:Adolescent; D000328:Adult; D016022:Case-Control Studies; D015331:Cohort Studies; D005260:Female; D006801:Humans; D007246:Infertility / Q000453:epidemiology; D008297:Male; D012737:Sex Factors; D012725:Sexual Behavior; D012735:Sexual Dysfunction, Physiological / Q000453:epidemiology*; D016135:Spinal Dysraphism / Q000150:complications* / Q000473:pathology* / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Infertility; Sexual dysfunction; Spina bifida