I’ve recently been working with lots of folk who manage children with disability and long-term conditions (LTC), a massive group of heterogenously named conditions with sometime similar and sometimes different problems. The teams working with them are passionate and committed and frequently want to use research.
Then they go looking for it.
And frequently find diddly-squat.
Now – the experience of not finding evidence to help your question is not unique to disabilities – there are plenty of uncertainties in children’s cancer, neonatology and diabetes. How can you move on without E in an EB way?
We can take this forward in two ways. First, acknowledging the lack of really good evidence, we should use indirect, analogous and ‘lower level’ evidence. Responding to the clinical problem will be combining what data we do and don’t have with discussions with the parents and child/young person.
Second, we might use this to generate a clinical study question and seek folk to answer it. EBM is certainly not clinical research, but many really important clinical trials develop from the gaps identified by this sort of approach.
EBM is possible, even without obvious evidence, and it’s not that uncommon to go searching and find very little.