A clinical guideline or clinical practice guideline is a document with the aim of guiding doctors in decisions and providing criteria for diagnosis, management, and treatment in a specific area of medicine or for a specific condition. Modern medical guidelines are based on thorough reviews of current evidence that supports performing a certain procedure or ordering a certain lab test. They usually include input from consensus statements, which are based on input from experts in the field, but unlike the latter, they also address practical issues.
There are some existing recommendations for the evaluation of children with suspected autism, but they are largely based on expert opinion and a little supporting evidence. One of the goals of the AIR-P project is to develop evidence-based guidelines. A preliminary phase in this process will be to develop more consensus based guidelines using expert opinion, and then studying these recommendations to find evidence of their effectiveness.
Consider an example of whether every child with a skin rash should have a skin biopsy performed. Many rashes are easily diagnosed, such as a sun burn or poison ivy, without any need for laboratory tests. In these cases, a skin biopsy would be unnecessary, could cause pain to the patient, and would increase costs for the family or their insurance provider. Pretty quickly decisions about skin biopsy would be narrowed down to certain types of skin rashes, or types of skin lesions. The decision to do the biopsy would depend on the benefit to the patient (better diagnosis and better treatment) balanced by the negative factors (risk and pain for the patient, expense to the patient and the health care system). Researchers might examine this issue by actually doing skin biopsies on a group of patients, such as the next 100 patients seen, and look at the results. Based on the results, the recommendation becomes more specific ("Biopsy was not helpful in diagnosing sunburn, but was helpful with moles that have appeared in the past six months") and clinical guidelines then would be based on some evidence that had been gathered in a systematic way.
Today, there is not a lot of evidence to support the recommendations in guidelines for treating medical problems in children with autism spectrum disorders. The AIR-P Network is developing consensus based guidelines using expert opinion, and from this will be collecting the evidence to improve these guidelines as time goes on.
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