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Do adult men with untreated hypospadias have any adverse outcomes? A pilot study using a Facebook advertised survey.
Bruce Schlomer, MD, Laurence Baskin, MD, Hillary Copp, MD, MS, Benjamin Breyer, MD, Michael DiSandro, MD.
University of California, San Francisco, San Francisco, CA, USA.

BACKGROUND:
Hypospadias is a common congenital anomaly that is usually treated surgically in childhood. Consequently, the natural history of untreated hypospadias (UH) is not well described. Urologists occasionally see adults with UH who are unaware they have an abnormality and have no adverse outcomes. This raises the question of whether hypospadias, especially mild, is overtreated. We hypothesized that men with UH would have similar outcomes to normal men in terms of penile satisfaction, sexual health, bother from penile curvature, urination symptoms, paternity, frequency of sitting to urinate, and health related quality of life (HRQOL).
METHODS: Facebook was used to advertise a survey on male anatomy and symptoms to adult male Facebook users. Self-designed and pre-tested questions utilizing sketches of penile anatomy were used for participants to self-identify with UH. Outcomes included: Sexual Health Inventory for Men (SHIM), question about penile curvature and difficulty with intercourse, International Prostate Symptom Score (IPSS), pediatric penile perception index (PPPI), psychosexual milestones, paternity, diagnosis of infertility, frequency of sitting to urinate, and HRQOL with the CDC HRQOL-4 module. Dichotomous outcomes were compared by chi-square, ordinal by Wilcoxan rank sum, and continuous by t-test.
RESULTS: 1075 men responded with 736 completing questions regarding self-anatomy and of those, 36 (4.9%) self-identified as having UH. UH men were more likely to report not being born in USA (78 vs. 91%, p<0.008) and not being born in a hospital (71 vs. 94%, p<0.001) but were similar to normal men in other demographic characteristics. UH men reported worse SHIM scores (16.3 vs. 20.6, p<0.001) and worse IPSS scores (9.1 vs. 5.9, p=0.005). UH men reported more ventral penile curvature (p<0.001) and were more likely to report that curvature made sexual intercourse difficult (p<0.001). UH men had worse satisfaction regarding position and shape of meatus (p=0.028) and penile curvature (p=0.015) on the PPPI. UH men reported more frequent sitting to urinate (p=0.004). Psychosexual milestones, paternity, infertility, and HRQOL were not different between groups. When the UH group was stratified into mild (n=21) and severe (n=15) and each compared to normal men, mild UH men had similar measures to normal men except worse SHIM scores (p=0.005) and more ventral penile curvature (p=0.003). In contrast, severe UH men had worse IPSS scores (p=0.004), worse SHIM scores (p=0.02), more ventral curvature (p=0.09), more bother from (p<0.001) and dissatisfaction with (p=0.02) penile curvature, more frequent sitting to urinate (p=0.003), and more unhealthy physical (p=0.003) and mental (p=0.02) days than normal men.
CONCLUSIONS: Men with self-identified UH reported worse measures on the SHIM and IPSS, more ventral penile curvature and bother from that curvature, more frequent sitting to urinate, and more dissatisfaction regarding meatus appearance and penile curvature. Men with mild UH had fewer differences from normal men than men with severe UH. Research is needed to determine if surgical treatment of hypospadias in childhood improves outcomes in adults, especially in mild hypospadias. The use of social media may be helpful in studying long term outcomes in patients with rare diseases.




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