What is the prevalence of hypospadias in boys born in the UK?
EUROCAT (European Surveillance of congenital anomalies) found that in a study of 5,871,855 births, during the period of 2001 to 2010, approximately 1 in 269 boys were born with HS.
This compares with a similarly ascertained figure of 1 in 952 births in the UK for cleft palate.
In some areas in Europe in which the prevalence rate was obtained by “systematically performing standardized examination of complete birth cohorts” (Bergman et al., 2015), e.g. Mainz (in Germany) and Rotterdam (in the Netherlands) figures as high as 1 in 136 boys, and 1 in 132 boys respectively were found for hypospadias.
It is important to say at the outset, that I write this as a man with hypospadias (HS for short). I say this because it is essential from the beginning that you know two things; firstly that the statistics I will put in front of you are not dry data for me, rather, at some level, they are about me.
Secondly, because it is important that if you have come as far as reading this website that you realise that you are not alone.
As you read on, you will see that actually, men with HS are everywhere. If you are a woman reading this website you are probably a mother of a child with HS. Again, you are not alone.
Other articles on this website as well as elsewhere address what HS is. My aim in this piece is to establish, essentially, just how common HS is in the UK. And I write this as a doctor, but not as a doctor of medicine. If my doctorate (which is in education) is of any use here, it is down to the fact that I am used to trying to establish clarity in a field awash with often contradictory statistics.
We need to be clear about what constitutes hypospadias. It’s a condition generally divided into three classifications: anterior, middle and posterior (Hennekam et al., 2013). Here we are interested in all three classifications of HS, since the severity of the diagnosis is more complex than the placement of the urethra (Snodgrass et al., 2011). And in fact, any diagnosis of HS may have an effect on the quality of life of a boy and his family, regardless of the classification that comes with it.
The European study (EUROCAT; www.eurocat-network.eu), collates data from the British and Irish registries, together with data from registries across Europe regarding birth anomalies.
This is a huge cohort (statistical data set) comprising 5,871,855 births, i.e. all births, whether there are congenital anomalies or not, in these registries between 2001 and 2010. While there are issues with data feeding in from British and Irish registries which do not include anterior HS, and a change in practise during this time frame (2001 to 2010) in other European registries to include anterior HS, my suggestion here is that this is a good data set (actually it is the best/only one we have got) from which to find a prevalence of HS.
There is an assumption here that a good figure for Europe as a whole is a good figure for the UK, and I have every reason to believe that this should indeed be so: a good figure for Europe should indeed be representative of what is occurring in the UK.
So, the numbers that emerge from this huge study of 5,871,855 births, are as follows:
“Total hypospadias prevalence rates were calculated as the total number of hypospadias cases divided by the total number of births (male and female) in the population covered by the registry.” (Bergman et al., 2015). This is then multiplied by 10,000 for rate per 10,000. In the time frame 2001 to 2010, 10,929 cases of HS were registered. This yields a rate of 18.6 per 10,000 births: (10,929/5,871,855) x 10,000 = 18.6125
However, given that HS only occurs in boys (although there are occasional exceptions to this), we need to double this figure. Therefore, approximately 37.23 per 10,000 boys were registered with HS between 2001 and 2010. This is perhaps more easily understood as 1 in 269 boys.
Here we can consider a comparison with other common birth (congenital) anomalies. So, for example, cleft palate was found in the British and Irish registries to have a prevalence of 10.5 per 10,000 births (PHE, 2017). This represents 1 in 952 births.
The EUROCAT report (Bergman et al., 2015), notes that in terms of variation between registries across Europe, “more reliable prevalence rates and trends can be ascertained by systematically performing standardized examination of complete birth cohorts.”
“This was done in Rotterdam for hypospadias (Pierik et al., 2002) and is routinely done by the Mainz registry. In Rotterdam, a hypospadias prevalence of 38 per 10,000 live births was seen from 1998 to 2,000 (ibid), very similar to the total prevalence of 36.83 per 10,000 births found in Mainz from 2001 to 2010.
“The main drawbacks of this approach are that the population size is invariably small, only a very limited region is covered, and it is more expensive to conduct.”
In addition the report indicates that, “only Mainz believed that their ascertainment of hypospadias cases was complete, since every newborn is examined by registry paediatricians” (ibid).
Taking the Mainz figure, we can ascertain that the prevalence in the registry in Germany is 36.8 per 10,000 of all births, equivalent to approximately 74 per 10,000 boy births. This is equal to 1 in 136 boys.
Taking the Rotterdam figure, during a different time frame (1998 to 2000), the figure is 38 per 10,000 of all births. This is approximately 76 per 10,000 boy births. This is equal to 1 in 132 boys.
In conclusion, the best available data shows that HS is considerably more common in the UK, although less talked about, than other common birth anomalies such as cleft palate.
I believe it is important that such information is known to the public and that the wall of silence which surrounds this condition is addressed. There is no shame involved with having hypospadias! And I suggest that starting to talk about just how common hypospadias is may open up a more general conversation about what it means to have hypospadias.
References
Bergman, J. E. H., Loane, M., Vrijheid, M., Pierini, A., Nijman, R. J. M., Addor, M.-C., Barisic, I., Béres, J., Braz, P., Budd, J., Delaney, V., Gatt, M., Khoshnood, B., Klungsøyr, K., Martos, C., Mullaney, C., Nelen, V., Neville, A. J., O’Mahony, M., Queisser-Luft, A., Randrianaivo, H., Rissmann, A., Rounding, C., Tucker, D., Wellesley, D., Zymak-Zakutnia, N., Bakker, M. K. and de Walle, H. E. K. (2015) “Epidemiology of hypospadias in Europe: a registry-based study”, World Journal of Urology, 33(12), pp. 2159-2167.
Hennekam, R., Allanson, J. E., Biesecker, L. G., Carey, J. C., Opitz, J. M. and Vilain, E. (2013) “Elements of morphology: standard terminology for the external genitalia”, American Journal of Medical Genetics Part A, 161(6), pp. 1238-1263.
PHE 2017. National congenital anomaly and rare disease registration service (NCARDRS): Congenital Anomaly Statistics 2015. London: Public Health England (PHE) publications.
Pierik, F. H., Burdorf, A., Nijman, J. R., de Muinck Keizer-Schrama, S. M., Juttmann, R. and Weber, R. F. (2002) “A high hypospadias rate in The Netherlands”, Human reproduction, 17(4), pp. 1112-1115.
Snodgrass, W., Macedo, A., Hoebeke, P. and Mouriquand, P. D. (2011) “Hypospadias dilemmas: a round table”, Journal of pediatric urology, 7(2), pp. 145-157.