ESPE2024 Symposia Disorders of Sex Development: Novel advances in management (3 abstracts)
Karolinska Institutet, Stockholm, Sweden
Hypospadias is a malformation in boys when the urethra opens somewhere along the penis, in the scrotum or in the perineum. The condition is operated with different methods according to the severity. The cause is complex, but early growth restriction and genetic factors are important. Over the last decades different studies have shown that having hypospadias affects life in many ways also later in life due to both underlying risk factors, the surgery and affected sexuality. The outcomes are worse in those with severe hypospadias, but similar problems can occur in all. Problems that are common concern penile size, and appearance and micturition problems. In order to have longer follow-up time we used national register studies in Sweden and show that sociodemographic factors do not differ related to the phenotype. The risk for neuropsychiatric disorders is however increased. The fertility is also impaired and correlated to severity. Concerning the long-term somatic outcome, we show that these men have an increased risk for hypogonadism, late puberty, shorter height, obesity and cardiovascular disease. In addition, there is a small but significant risk for urological cancers, but not for prostate cancer. In order to achieve a deeper understanding of the consequences of being born with hypospadias we performed deep interviews and identified the importance of being well informed and owning your own narrative and also that the impact of being born with hypospadias differs a lot. The take-home messages from these studies are that age-adjusted information is very important, as is dedication during primary surgery to achieve an esthetic good result with a straight penis. There is also a need for transitional care into adulthood to give information and easier access to care.