DOI: 10.1093/jsxmed/qdae001.105 ISSN: 1743-6095

(111) Evaluation of Sexual Education Needs in Spina Bifida Adolescents and Correlation Between Sexual Satisfaction with Depression and Anxiety

P Kohli, H Syed, J Olais, M Soohoo, Z Baker, E Vasquez
  • Urology
  • Reproductive Medicine
  • Endocrinology
  • Endocrinology, Diabetes and Metabolism
  • Psychiatry and Mental health



Spina bifida is a congenital disorder with many neurological sequelae, most notably, decreased sexual function and infertility. While some neuro-urological related factors have been extensively studied among patients with spina bifida, sexual health and infertility continue to be largely unaddressed in this population, especially in the adolescent population. Although previous studies show the need to address sexual health in spina bifida patients, they do not assess the level of sexual health knowledge adolescents possess or the degree to which their psychological functioning is impacted by sexual dysfunction. Although a validated sexual and reproductive empowerment scale exists for adolescents, it has not been utilized in spina bifida patients. This can be due to stigmas that patients with spina bifida may not be engaging in or desire sexual activity. Overall, the stigma of addressing sexual health in adolescents and the inadequacy of current sexual health curriculum, prevents adolescent spina bifida patients from accessing sexual health related information.


This study will assess the baseline sexual health literacy and sexual health needs of adolescents with spina bifida. The second aim of this study is to identify the barriers that adolescent spina bifida patients face when attempting to gather information regarding their sexual health. The third aim of this study is to determine whether sexual literacy and sexual empowerment scores are associated with self-reported depression and anxiety as measured by the PHQ-9 and GAD-7 in this population.


English- and Spanish-speaking adolescent patients aged 15-21 presenting to a Spina Bifida Multidisciplinary Clinic for routine clinical care will be prospectively recruited for participation in a cross-sectional questionnaire study designed in REDCap. Correlation analysis will be utilized to identify the association between depression, anxiety, sexual health literacy, and sexual empowerment scores. The Patient Health Questionnaire-9 and then Generalized Anxiety Disorder-7 questionnaire will be utilized to assess depression and anxiety, respectively.


Per literature review multiple studies show that adolescents with spina bifida do not have sexual health needs addressed by any provider or family member. Many of these patients feel that their providers assume they do not engage in sexual activity, or view them as asexual, and potential partners are hesitant to discuss sexual desire due to physical limitations. Studies done assessing sexual dysfunction and related emotional well-being, were based on interview studies and extrapolating significant themes. Upon an initial survey of 2 pediatric urologists at CHLA, we have found that many patients do not feel comfortable addressing sexual health and that there are no current tools for pediatric urologists to initiate sexual health related discussion. Currently no such validated comprehensive questionnaire exists to assess level of sexual health knowledge, sexual desires, and psychological state for adolescent spina bifida patients.


There is a need to establish a communication tool for providers to initiate discussion regarding sexual health in adolescents with spina bifida.



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