Plain-language summary of proposal:
Hypospadias is a condition that occurs in boys where the urethral meatus, or opening where the urine comes out, is not in the typical position. The current consensus among pediatric surgeons it to repair the hypospadias surgically within the first year of life so that the boy will be able to live his life with a “normal” penis. Thus, hypospadias surgery is now one of the most common genital surgeries performed in children under 18 months of age. Recently, however, doubt has been cast on the validity of this consensus view. First, the complication rate of these surgeries is high, second, the risk of anesthesia is higher in these young children, and third, there are ethical questions regarding informed consent; i.e., the ability of a minor to consent to genital surgery for a non-life-threatening condition.
So, the question becomes: Is living life with the penile meatus not in the typical position detrimental to a child’s and/or adult’s quality of life? If it is not detrimental, then the obvious answer is that we should wait; surgery can be done when the child is older. However, it is also important to ask this question among a diverse group of people, as different ethnicities and cultural backgrounds will most likely affect how this question is answered. Certain groups of people may do better with early surgery, and others with surgery later in life. This has never been studied before.
Our hypothesis is that most hypospadias surgery is unnecessary in infants and small children, but the results will vary by ethnicity and cultural background. One of the ways we will study this hypothesis is by seeking out adults with hypospadias who have never had surgery, and see how they fared in life. Since almost all children in the past have had surgery for their hypospadias, the numbers of “non-surgically altered” hypospadias patients are quite small, so we will need to study a very large group of adult men to find these patients. The only way to recruit enough adult patients from diverse groups (to include people with different ethnicities, sexual preferences, gender identities) would be online, through electronic medical records, and with community involvement.
We will create the first registry for hypospadias in the nation, and this will be the first time watchful waiting (non-operative treatment) of genital atypia will be evaluated scientifically, and the first time a large diverse group of adult non-operated patients can be studied.
