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I was a moderator recently at a conference on research in autism. The conference was for parents of children with autism and pervasive developmental disorders (PDD) and for professionals working with these children. I was amazed to discover that over 2000 people showed up to hear the proceedings! The conference hall was completely packed. I have never spoken to such a large audience; there were 3 screens set up and I could not see to the far end of the room without my glasses on. It was evident that parents and professionals were keen to hear the latest information on autism and PDD. How marvellous, I thought, a chance to present evidence-based approaches to parents of children with autism.
The morning session went well. There was a lecture on the latest research on the genetics of autism and another on recent immunological findings. The lectures were well presented; the speakers avoided medical jargon and were circumspect, judicious, and balanced in their presentation of the evidence. As a moderator, I had an easy time of it. The audience responded with polite applause and genuine interest.
But the afternoon was quite different. Two presentations held the audience on the edge of their seats. These dealt with the notion that autism was either caused by allergies to certain foodstuffs or by a “leaky” gut that allows toxins to enter the body. There was much interest in “secretin,” a hormone released by the pancreas and used in gastrointestinal investigations. Some weeks before the conference, the US television show, Dateline, broadcast a special programme about a boy with autism who was given secretin as part of a radiological examination of the gut. The boy showed remarkable improvement and now there was great demand for secretin as a “breakthrough cure” for autism. There was talk about how this “new discovery” fit with allergens and the leaky gut, and much enthusiasm about the “secretin receptor” in the brain.
The audience was excited. Many parents were keen to obtain secretin and to test it out as soon as possible. Several physicians joined the clamour and spoke out in favour of trying it immediately. These speakers were applauded by some of the audience for showing the courage to stand up to the “medical establishment.” Parents said they could not wait for the randomised clinical trials to be conducted and wanted to obtain secretin for their children immediately.
I was bewildered, confused, and not a little embarrassed as moderator. What could I possibly say? That no evidence exists that secretin works as a treatment for autism? That there are no known effects of secretin on the human brain?1 That no evidence exists that autistic children had a leaky gut? That it is unwise to use isolated research findings to promote a medical treatment before we know whether that treatment is safe and effective? I realised that even if I did speak out it would fall on deaf ears. As an advocate of evidence-based approaches to children's mental health, I had to wonder what role, ultimately, does evidence have in these circumstances. Did anybody really care what the evidence was?
Problem of evidence
As I stood there at the podium I could see that an enormous gap still existed between our knowledge of the mental disorders of childhood and how that knowledge actually affects parents. Evidence is just not as tangible to them as the excitement of a new discovery shown on national television. I saw how vulnerable these parents are, how some physicians take advantage of their desperation. I came to appreciate how insignificant our information must seem; we do not really know what causes autism and we do not yet have a cure. The judicious and balanced presentation of evidence appears so cold compared with the emotion unleashed by these sensational “new cures.” Our meta-analyses and randomised controlled trials must seem pathetic in comparison with the testimony of one parent on television. Those of us who preach skepticism, caution, and peer review are often made to feel defensive and out of date. We may be winning over our colleagues in child psychiatry, in paediatrics, and in child psychology to the value of evidence-based practice, but we have made little headway where it counts—with the parents of children disabled by psychiatric and developmental disorders.
Similar stories could be told, I am sure, at a conference on attention deficit disorder or other emotional and behavioural disorders of childhood. The pleas for help and understanding by parents of disabled and unhappy children are urgent and strident. Come down from your ivory tower! Slog it out with the rest of us! These problems are present in other parts of medicine and in adult psychiatry, but they appear to have special urgency in child psychiatry. After all, it is our children who are affected. What parent would not do everything possible to help their disabled child? There is indeed no time to wait for the clinical trials to show that secretin “works” as a treatment for autism.
Professionals and parents often live in two solitudes divided by the meaning of the term “evidence” and what we take to constitute evidence. At one end of the spectrum are the tenets of evidence-based approaches, and at the other end is the power of individual testimony. An enormous gap exists between our empirical knowledge base and the information that parents need and want as they plan for the treatment of their child with a disability or a psychiatric disorder. One difficulty is that, in child psychiatry, we have few treatments or pills to dispense. What we do provide is information; what caused this problem; how long will it last; what are the chances of improvement; what can we do to limit the secondary effects; how can we help; what community resources are available? This is information only, and it must be disappointing to parents looking for something more concrete with which to help their children.
Although the accumulation of a research database in child psychiatry has been rapid and extensive, especially in the past 10 years, many problems remain. The trickle down effect of all this research has been, unfortunately, limited if we look at actual clinical practice in the community. There is enormous variation in the practice of children's mental health; some children are diagnosed as having attention deficit disorder with only a cursory evaluation2; a large variation exists in the use of antidepressant medication by British and American child psychiatrists3; only 14% of general paediatricians in the US question adolescents about depression4; and many children with autism and PDD are receiving multiple medications, some of which have been shown to be of limited efficacy, many of which have never been properly evaluated.5
Future of evidence
But my year as co-editor of Evidence-Based Mental Health has made me more optimistic about the future. I have realised that the situation is changing, albeit slowly. More studies are done on the outcome of child psychiatric disorders and their treatment. More and more systematic reviews and meta-analyses are being published. There is also greater appreciation of the need for treatment manuals and the methods developed by clinical epidemiologists to apply evidence to actual clinical problems. All this speaks to a general reorientation among specialists, and that is a welcome sight. But what about primary care and children's mental health? What about teachers, occupational therapists, speech therapists, and other professionals that provide a service to children with disabilities and psychiatric disorders? What impact have evidence-based approaches had at those levels of interaction with the family?
It is important for clinicians of all disciplines to present parents with the value of scepticism at an early point in the natural history of their child's disorder, before they have been too disappointed by their experiences. Evidence-based practice is above all else the interpretation of evidence as it applies to this particular child living in this particular predicament. The process must never be divorced from the social context within which each problem arises.6 Evidence-based practice is a sharing of information with parents, a dialogue with them about the risks and benefits of various alternatives. An evidence-based practitioner does not “prescribe” a treatment, instead the parents and the child are listened to, their values and cultural background are taken into consideration, and the particular and unique predicament of each child is appreciated. Our role is to help parents to make informed choices and sympathise with their dilemma when ambiguity abounds. The evidence is presented in a balanced, hopeful, and optimistic fashion: “this is the best evidence we have, the situation is not a perfect fit, but there is reason to believe that if we follow this treatment there may be a beneficial outcome. What do you think?”
We have tried to convince healthcare providers of the value of evidence-based approaches and have been largely successful in this regard. The next step lies in teaching parents themselves evidence-based approaches to evaluate the biomedical literature. This is a constituency we ignore at our peril. With the growth of parent support groups and the internet, parents have become voracious consumers of information about their child's condition. We need to understand the beliefs, concerns, and information needs of parents7 and learn why some turn to testimonial evidence. Can parents accept evidence-based information even if it conflicts with their previous beliefs and aspirations? We certainly need to learn more about how parents hear what we tell them since studies have shown that similar information told in 2 different ways can be understood quite differently.8 It is also time to develop workshops for parents on how to be an educated consumer of the evidence and to help parent groups create newsletters that summarise in jargon free language the best available evidence on a disorder.9 These attempts may not yet be bridges that cross the two solitudes, but they may be rafts that keep some people afloat.
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