Given the historical difficulties with follow up that have long been noted, there was a great opportunity for those at GIDs (or any other group that ran clinical trials) to attempt something new, where there was a real attempt to carry out a much longer term follow up. It would have been justified, under the circumstances, to make the attempt. Obviously follow up is difficult, but very few seem even to have considered it.
I am interested in the 200 out of 2500 figure. I find myself wondering whether they considered each case on its merits in comparison with the protocols established by the Dutch study, or whether they used a comparative model, where they selected just under 10% of cases, because it had been previously established that 90% would desist on going through puberty.
If it was the latter, the flaw is obvious. The 90% who desisted were 90% of the tiny group with very serious problems, who would have been referred back in the days when referral would only be made when it was obvious there was a fairly well defined and well established, ongoing feeling of dysmorphia.
Total referrals in 2009-10 were 77. 10% of that group would be 8 patients whose dysmorphia would persist and who would eventually go through medical transition.
If the rise in figures is mostly due to social contagion or fashion or misunderstanding, rather than a genuine revealing of patients who ought to have been referred before, but weren’t due to ignorance, then there’s a huge problem, even if we assume they selected the correct 10% from the old category.
Potentially, if 8 out of that 200 were the ones who really would benefit from transition, then 192 of them probably didn’t need to.
And now I feel properly sick.