The incidence of disease in the UK in under 15s is something like 20 per 100,000 per year. Prevalence is often quoted at 0.4% (four in every thousand) but I challenge you to identify the paper where this is actually calculated. Incidence is one of those words you kind of have a feel for without actually knowing quite what it is. It is the measure of NEW cases of a disease and is often measured per 100,000 (people) per year. This is distinct from prevalence which is about the total number of people with a disease. As you can imagine one problem with measuring incidence is knowing how many people have the disease, the other is having an accurate idea of how many people make up the general population. You could say 1 out of 100 children were admitted to A&E because of new onset type 1 diabetes (hence forth abbreviated to T1D for the sake of my sanity) but it wouldn’t really tell you anything about anything except that A&E department (the numbers used here are as an example and are based on no factual information). You might think we have a good record of who has T1D, after all it is fatal if untreated, but when you start including new adult cases of T1D you start to muddy the water with cases of type 2 diabetes. ‘Adult Cases?’ I hear you cry! ‘but T1D is a disease of childhood, isn’t it?’. Actually not so much; as I understand it the majority of individuals actually develop disease after the age of 15 but per age group the incidence is lower in adults (at least with our current definitions of T1D which are slightly circular). For the reasons mentioned above incidence of diabetes is easier to calculate in some places (generally those with better developed health care) and in children. Even in western countries however national registers of diabetes are few and far between therefore another important part of calculating incidence is to try and figure out who you might have missed. This is done by cross checking the cases you found with cases identified by an independent source and is known as secondary ascertainment. If you see incidence without ascertainment be suspicious, very suspicious! The other challenging thing about incidence is that you get a lot of variation year on year. This means you need data from a lot of years to get a real sense of the variation and any change in the average incidence.
So now we are caught up on the tricksiness
of incidence calculating what is all this about incidence rising? Over the last
30-40 years we have started to get some good data collected over a number of
years on the incidence of disease in children aged under 15 years. Studies of
the incidence of disease have been spearheaded by a European study (EURODIAB)
and a worldwide study (DIAMOND) which have analysed data from a number of
countries simultaneously. These studies have shown almost universal increased
incidence of disease in childhood at an average rate of 3-4%. Of course that is
a increase in a small starting incidence but it is an increase that adds up; the
most dramatic data are from Finland (which is also the country with the highest
incidence of disease) where incidence increased from 31 per 100,000 per year to
64 per 100,000 per year in just 25 years (1980-2005). The increased rate of
disease is most obvious in children under the age of 5 years old. There are two
possible explanations 1) that disease is becoming more common in all age
groups, 2) that individuals are developing disease at an earlier age. We really
need good data on disease in adults to figure out which of these possibilities
is true and as yet no consensus has been established. So though I say ‘rising incidence’ this is
actually short hand for ‘rising incidence of type 1 diabetes in under 15s in
‘more developed’ countries because I have no idea about incidence in adults or
most of the world’s population’. There have been a few reports of a plateau in
incidence but as yet none have been sustained.
Why is incidence rising? One might suppose
that more people with diabetes are now surviving long enough to reproduce and
so maybe we are passing more disease on to new generations genetically (for
more info see the genetics section). In a small way this is true but the
increase in incidence is too dramatic to be caused by proliferation of ‘at
risk’ genes. Some researchers have looked at genetic risk in populations of
individuals who have been diagnosed with disease at different time points. These
studies show is that people who are diagnosed more recently have (on average)
less genetic risk for diabetes. This means those with high genetic risk are
still developing disease but more people with less genetic risk are now
developing disease. Why might this be happening? Pretty much all biology boils
down to the product of genes and environment. So if the genetic contribution is
reducing the environmental contribution must be increasing. What might this
environmental factor be? Short answer, we don’t have a clue. For some more
ideas see the environmental factors post.
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