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Saturday, January 04, 2003More often these days the development of disease descriptions come from "consensus conferences" where a group of experts, often with financial links to drug companies, meet to produce guidance for others. Once a diagnosis exists, the tendency is for doctors to employ it. The most obvious example of this is in autistic spectrum disorder - a wide-ranging diagnosis now used for many children who would previously have been diagnosed as subnormal. Another example is ADHD - attention deficit hyperactivity disorder. As soon as many patients are being diagnosed, it becomes possible to market treatments - such as Prozac for ADHD. So facilitating such conferences is a good way for drug companies to promote their wares. And to expand their markets. And it isn’t just psychological diseases whose definitions have been broadened lately. Obesity is more broadly defined now, hence the epidemic. So is diabetes, another disease that’s often labeled as an “epidemic.” These expansions can’t all be blamed on drug companies, though. In some cases, it’s a legitimate effort to improve health outcomes. This is the case with diabetes. By setting lower blood sugar levels for the diagnosis, the hope is that earlier treatment will delay even longer the complications of the disease, such as heart disease and kidney failure, and blindness. The same can be said of obesity, although the case is less clear-cut. Sometimes, as in autism, it’s the work of activists. The more people who can be counted as suffering from a disease, the more likely the government is to increase research funding, and other state-funded help for those suffering from it. Whether instigated by doctors, drug companies, or political activisits, however, the outcome is the same. As the BMJ article pointed out, we risk narrowing the definition of normal to such a degree that even the healthy are labeled sick. For Example: A good example of just that phenomenon is what has happened with autism in the past ten to twenty years. Once upon a time, autism meant a severe developmental disorder that rendered its victims completely unable to communicate or interact with other people in any way. Now, the definition has been substantially broadened. But even that broad definition wasn’t enough for the recent survey of the prevalence of autism published in JAMA. Not content with the DSM-IV criteria that are generally now used for the diagnosis, the authors included more general, less debilitating disorders: Throughout this article, the terms autism and autism spectrum disorders (ASDs) refer to autistic disorder, Asperger disorder, and pervasive developmental disorder - not otherwise specified (PDD-NOS). Pervasive developmental disorder, not otherwise specified is a waste-basket term, used to classify those who don’t fit into any of the other categories. Asperger's disorder, sometimes called “high functiong autism,” was only defined in the 1990’s. Before that, we called such people “eccentric” or ‘geeky.” Of course, “eccentric” and “geeky” aren’t the sort of labels that get schools special education funds, but Asperger syndrome, having the blessing of the medical profession, does. It’s no surprise that it has caught on as a diagnosis . Derek Lowe does a fine job of dissecting the media’s response to the JAMA article. In truth, the paper does not prove that autism itself has increased, only that the diagnosis of autism has increased, and it does that largely by including disorders that aren’t what most people think of as autism - that is the severe and disabling form of it. An accompanying editorial, although generally supportive of the claims that autism has increased, expresses reservations about them, nonetheless. One of those reservations is the way in which the classification of disabilities has changed: .... during 1987 to 1994, diagnostic substitution occurred; thus, while the prevalence of autism increased from 5.8 to 14.9 per 10,000, the prevalence for mental retardation decreased from 28.8 to 19.5 per 10,000. These trends then cancel each other. According to the authors, new federal legislation (Individuals with Disabilities Education Act15) mandating that states provide early intervention programs for toddlers with developmental delays played a role in the increasing use of the diagnosis of autism. The editorial also points out that there has been a disproportionate increase in spending on autism in relation to the scientific evidence of its prevalence: Although claims about an epidemic of autism and about its putative causes have the most weak empirical support, the subsequent controversy has put autism on the public agenda. In recent years, children with autism, their families, and professionals involved in their care and in research have seen welcome and legitimate increases in public funding. Yet, ironically, what has triggered substantial social policy changes in autism appears to have little connection with the state of the science. Whether this will continue to be the case in the future remains to be seen, but further consideration should be given to how and to why the least evidence-based claims have achieved such impressive changes in funding policy. Yes, indeed, we should give consideration to how and why claims of little evidence result in such impressive changes in public policy. Serious consideration. posted by Sydney on 1/04/2003 03:26:00 PM 0 comments 0 Comments: |
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