Sexual Function and Dysfunction in Individuals with Spina Bifida: A Systematic Review

Hughes, Taylor L.; Simmons, Kirsten; Tejwani, Rohit; Barton, Karen D.; Wiener, John S.; Purves, J. Todd; Routh, Jonathan C.

doi:10.1016/j.urology.2021.03.042

Cited by 14 publications

(9 citation statements)

References 44 publications

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“…Regarding sexual dysfunction, there are limited data on the effect of SB on sexual health and activity. Two systematic reviews by Streur et al and Hughes et al noted a clear trend in sexual dysfunction for men and women [ 125 , 126 ]. Notably, while some men (56–96%) can achieve an erection, it may not be adequate for penetration and, when present, ejaculation is often dripping or retrograde (as evidenced by semen in the urine).…”

Section: Managementmentioning

confidence: 99%

“…There is also reduced ability to orgasm. Granted, the studies that attempt to characterize sexual health in the SB patient population are limited by their small sample sizes and utilization of questionnaires not validated in this population; there is a need for engaging in sexual health dialogue at a younger age to help normalize sexual activity and sexual health [ 125 , 126 , 128 ].…”

Section: Managementmentioning

confidence: 99%

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Spina Bifida: A Review of the Genetics, Pathophysiology and Emerging Cellular Therapies

Hassan

Lee

et al. 2022

JDB

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Spina bifida is the most common congenital defect of the central nervous system which can portend lifelong disability to those afflicted. While the complete underpinnings of this disease are yet to be fully understood, there have been great advances in the genetic and molecular underpinnings of this disease. Moreover, the treatment for spina bifida has made great advancements, from surgical closure of the defect after birth to the now state-of-the-art intrauterine repair. This review will touch upon the genetics, embryology, and pathophysiology and conclude with a discussion on current therapy, as well as the first FDA-approved clinical trial utilizing stem cells as treatment for spina bifida.

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Section: Managementmentioning

confidence: 99%

Section: Managementmentioning

confidence: 99%

Spina Bifida: A Review of the Genetics, Pathophysiology and Emerging Cellular Therapies

Hassan

Lee

et al. 2022

JDB

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“…Many men with spina bifida (SB) experience challenges with sexual health related to their underlying neurologic function. 1-3 Studies have assessed the prevalence of altered sexual function, 1 with many attempting to correlate sexual function with SB phenotype (eg, level of lesion). 4,5 However, no consistent predictors of outcomes have been identified.…”

mentioning

confidence: 99%

“…The domains assessed with the IIEF may also be inadequate to capture important aspects of sexual health specific to SB beyond physical function, such as the biologic and psychosocial effects of SB on sexual health. While there has been a recognized need for SB-specific measures, 2 patient perspectives and experience with sex have not been sufficiently obtained to capture necessary domains to include in a measure. Additionally, patient-perceived applicability and usability of the IIEF is not known.…”

mentioning

confidence: 99%

“I Just Haven't Done Any of That”: Applicability of the International Index of Erectile Function in Young Men With Spina Bifida

et al. 2023

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Purpose:We evaluate the applicability of the International Index of Erectile Function in young men with spina bifida and identify spina bifida–specific sexual experiences not captured by this measure.Materials and Methods:Semistructured interviews were conducted between February 2021 and May 2021 with men ≥18 years of age with spina bifida. The International Index of Erectile Function was completed by participants, and perspectives on its applicability were discussed. Participant experiences and perspectives around sexual health were discussed to identify aspects of the sexual experience not well captured by the International Index of Erectile Function. Demographic and clinical characteristics were obtained from a patient survey and chart review. Conventional content analysis framework was used for transcript coding.Results:Of 30 eligible patients approached, 20 participated. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most identified as heterosexual (17/20, 85%), were not in a relationship (14/20, 70%), and were not currently sexually active (13/20, 65%). Some perceived the International Index of Erectile Function as applicable, while others reported it was not, as they do not define themselves as sexually active. Aspects of the sexual experience not captured by the International Index of Erectile Function included (1) lack of control over sexual function, (2) poor lower body sensation, (3) urinary incontinence, (4) spina bifida–specific physical limitations, and (5) psychosocial barriers. Participant suggestions for improving the International Index of Erectile Function to increase its applicability were identified.Conclusions:While many perceived the International Index of Erectile Function as applicable, the measure inadequately captures the diverse sexual experiences of young men with spina bifida. Disease-specific instruments to evaluate sexual health are needed in this population.

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“…This can result in decreased genital sensation and altered erectile, orgasmic, ejaculatory, and reproduction function in affected males. 1,2 Furthermore, it is well documented that adolescents and adults with spina bifida are underinformed about sexual health compared to their able-bodied peers and specific to their disability. 3,4 Yet when the SBA developed a community-centered research agenda, “Having an Active Sex Life” was one of the research priorities expressed by the spina bifida community.…”

mentioning

confidence: 99%

The Next Step in Optimizing Sexual Health in Men Living With Spina Bifida: How Does Our Measurement Tool Measure Up?

Wiener

2023

Journal of Urology

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Sexual Function and Dysfunction in Individuals with Spina Bifida: A Systematic Review

Cited by 14 publications

References 44 publications

Spina Bifida: A Review of the Genetics, Pathophysiology and Emerging Cellular Therapies

Spina Bifida: A Review of the Genetics, Pathophysiology and Emerging Cellular Therapies

“I Just Haven't Done Any of That”: Applicability of the International Index of Erectile Function in Young Men With Spina Bifida

The Next Step in Optimizing Sexual Health in Men Living With Spina Bifida: How Does Our Measurement Tool Measure Up?

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