Imagine a deadly, but treatable, illness where "experts" refused to use their own science. Imagine if many oncologists, for example, simply didn't offer the medicines and interventions of their field. If dentists continued to use the tools used in the 1950s because that is the way they were trained?
Now picture yourself as the parent of a child diagnosed with an illness that kills at least one in ten of its victims and only one in three of the survivors go on to lives without disabling symptoms. You seek care only to find that there are no agreed upon rules, no protocols, no standards of care.
You discover that despite real and optimistic advances in the science of the field that most of the clinicians offering treatment do not offer these alternatives, or know about them. You learn that there is no accountability for those who use untested and purely speculative methods, and that the job of knowing what treatments exist is up to you -- a layperson. You may have to fight professionals and insurance and your health system for the right to use evidence-based care.
Welcome to eating disorder treatment in 2010.
My fellow blogger, Sheila Himmel, says it best:
"Five studies. That's the complete scientific literature about the effectiveness of different treatments for eating disorders for children and adolescents. The largest of these studies had 165 participants. "
The public doesn't know this. Parents don't know this and we need to: Eating disorders nearly always begin in puberty and adolescence when we are the ones likely to be guiding care. We enter the eating disorders world assuming there are validated treatments -- as there are for drugs and medical devices. After all, how could a clinician take on the care of our precious child without clear evidence that what they are doing really works?
We do need to develop more effective treatments but it is just as important is to stop using ideas that don't work. Not only is ineffective treatment painful for all involved the chance of recovery goes down over time, not up, and quickly. It is urgent that patients receive the most useful treatment at the earliest diagnosis and contingency plans be in place. Lives are lost because of ineffective treatment and it is time to stop blaming the patients and their families and the illness for this.
It is time to stop saying that all paths are equal, that it takes time, that patients have to find their own way, and that there are no wrong answers. There ARE wrong answers, and it is time for more people to say so.
Why are we in this situation? Probably because this is a new and multi-disciplinary field with a great deal of goodwill but a lack of science training. It is, without question, a really tough illness to witness and treat. Successful treatment requires training and experience in medical, psychiatric, and psychological factors beyond the training or experience of all but a few, but this doesn't stop people without that background from trying. The fact that many treatment providers are recovered patients can lead to uncritical professional courtesy between colleagues, and strong identification with patients. There are a lot of reasons we are where we are, but no excuses.
Everyone in the eating disorder world knows the dismal statistics for eating disorder survival with "treatment as usual." They should be unacceptable. We all care about the ravages of a life spent in the purgatory of restriction and binging and purging not just because of the medical effects but the emotional and cognitive anguish of being trapped in an anorexic, bulimic, or binge eating mind. The medical symptoms are nothing compared to the mental ones.
What I don't understand is why our society and the field is so tolerant of the current state of eating disorder treatment. After all, about five percent of the population experiences an eating disorder at some point. Most people know someone with an eating disorder, and many of us have wept with those who have lost family members to permanent disability, alienation, or death.
I don't believe any of those outcomes were necessary and I believe it is our fault -- all of us -- for allowing this situation to go on. We need to stop leaving patients to their illness as if they deserve their distress. We need to start treating families coping with this diagnosis as we would a friend with cancer: with support and casseroles and information. We need to stop nodding at pet theories and refuse to let eating disorder causation be a parlor game.
We need to question the dozens of specious treatments that are so blithely offered to the public, and demand research funding for eating disorders as we do other illnesses. Eating disorders affect five times as many people but in the U.S. receive less than $2 per $100 spent on schizophrenia, for example. This is because people aren't standing up, not because it affects fewer people or causes less damage to society.
We need to ask why even where good research exists it isn't being used. Is there any reason why the approach recommended by the American Psychiatric Association as the first line of treatment for anorexia, for example, is rarely offered to families despite decades of its successful use in the field? Why would most clinicians out there treating children still be unfamiliar with and untrained in the Family-Based Maudsley approach?
We have enough information about what works, and lack of evidence for what is commonly offered, right now, if we use it. We need more, but it has to start from the best evidence and not from antiquated and harmful approaches with no evidence. It is time for us all to get mad and ask how many lives would be saved if we insisted, starting today, on evidence-based treatment for eating disorders.
Follow Laura Collins Lyster-Mensh on Twitter: www.twitter.com/feasttweets
Jan Shepherd: Fat, Feelings and Freedom to Love Yourself
For example, the evidence shows that in treating anorexia nervosa in teenagers who have been ill for less than three years the Maudsley approach has the best record of success. http://www.ahrq.gov/downloads/pub/evidence/pdf/eatingdisorders/eatdis.pdf (Berkman, et al., Agency for Healthcare Research and Quality) and http://www.ncbi.nlm.nih.gov/pubmed/18444053 (Keel, et al, NIMH funded review) However, even though the strongest evidence supports Maudsley, only a small percentage of professional treatment providers have been trained in how Maudsley works or even offer it as an option to parents. The NEDA website is indicative of the current state of affairs. It lists about 100 providers in California, yet only about a half dozen of them offer a treatment model even resembling the Maudsley approach. This is surprising and disappointing. It shows that the majority are not taking advantage of the best available evidence for how to treat anorexia. I wonder if there are any eating disorder therapists out there who would like to offer an explanation for how this could be?
I agree with everything you said!
A couple of months ago, it reemerged along with a serious setback with my anxiety/depression, and I am left struggling to find resources to help me get through. Most of the information I can find centers around children and teenagers, and it can be frustrating, as not all of us 'grow out of it' or are 'cured' of eating disorders in our teens and early twenties.
I believe there is ALWAYS hope for full recovery. I'm not sure of any reason why the treatment for adults would be different than that of younger patients, either: full weight restoration and normalization of eating behaviors in an environment of psychological support and medical monitoring. Help with co-morbid issues and the side-effects of having lived in an altered brain state. Ongoing support that includes psychotherapy, psychiatric consultation, and medical monitoring.
The longer a person is ill the harder this all is, obviously, but the need no less urgent and the person no less deserving.
In May 2008, when my daughter was 11 yrs old and two days away from being admitted to the hospital I found Laura Collins at her table, on the web. I had not searched for any information on the web because I trusted the clinicans (pediatrician, psychologist, and dietician). The resources Jane says is available has to be searched for and is not readily available to the clinician. My pediatrician did not have time to go- and she probalby didn't feel the need to do so, and search for resources, because she was practicing what was being taught to her in her schooling and internships.
So, my 11 yr old daughter had been under the care of 3 professionals, a team approach, for 6 weeks and she was losing weight..enough weight to do the next step...admit her to a hospital. THIS COULD"VE BEEN AVOIDED!!!!!!!!!
She knew nothing of Maudsley and I was the one that gave her the information. The PhD psych person had known little of Maudlsey and never told us, until after she was in the hospital. I was the layperson, as Laura stated, and had to go get the resouces, print them, and show them to my ped!
When when was the last time someone with diabetes had to go search for evidence based treatment and say , here doc, can we try this now?
Thanks Laura..don't stop writing.
From my perspective, interest in family-based treatment is high. The Maudsley Parents website has seen exponential growth in web viewership in the past few years. Many other eating disorder organizations provide very good research-based information. The National Eating Disorders Association, for example was enthusiastic about adding a series of videos, including a review of the current five RCTs for adolescent eating disorders by Daniel le Grange, PhD and practical advice for parents by Katharine Loeb, PhD (along with more general eating disorder research topics) http://www.nationaleatingdisorders.org/research-efforts/index.php
http://www.nationaleatingdisorders.org/programs-events/parent-family-and-friend-network.php
Care in the community is not adequate as yet, but I really see brighter days ahead. I think of eating disorders as an energetic field with some outstanding researchers and many dedicated people working to improve care for those suffering with these difficult and debilitating illnesses.
Jane Cawley, co-chair
Maudsley Parents
Still, as you note, care in the community really is not adequate. Those outstanding researchers and organizations and clinicians need our support in pressing for standards and accountability. It is still quite rare for families to be offered evidence-based care and only a tiny percentage of those treating children are offering Maudsley.
We're on the same side here, though I'm feeling less patient. I'm really frustrated by the speed of change and the families and lives being harmed right now and the foreseeable future.
However, on the ground, things are still woefully inadequate.
Here in the UK, home of the Maudsley Hospital, true FBT is not offered by the majority of clinical teams. At a recent conference in London some clinicians (admittedly mainly non-UK based ones) were so ignorant of its principles that Professor Ivan Eisler of the Maudsley might just as well have been speaking in Czech for all that they understood him. Other clinicians offered dated, derogatory and downright daft ideas to little criticism from their peers, I hope because of professional courtesy, rather than because they actually agreed with them. Among some it is not thought shocking to embrace the idea of palliative care for anorexia, as being better than the nothing that is currently on offer when treatment has been unsuccessful.
Perhaps more pertinent, and certainly something dear to my own heart, even where evidence based treatment is offered, the resources available to clinicians implementing it are often so feeble that it is almost bound to be little better than nothing.
I'm the parent of a former sufferer and it staggers me that anyone concerned with the proper care and treatment of adolescents could take issue with anything you've said in your article. I'm reminded of a time when minorities were told that progress was being made and to not rock the boat or there would negative repercussions. That was bad advice then and it has not improved with age.
Keep rocking the boat until all sufferers have equal access to great care.
b
"We do need to develop more effective treatments but it is just as important is to stop using ideas that don't work. Not only is ineffective treatment painful for all involved the chance of recovery goes down over time, not up, and quickly. It is urgent that patients receive the most useful treatment at the earliest diagnosis and contingency plans be in place. Lives are lost because of ineffective treatment and it is time to stop blaming the patients and their families and the illness for this."
For those individuals that are suffering right now, the treatment that is available is inadequate. While brighter days may be ahead, it is slow in coming compared to other diseases. How many more innocent lives will be lost because of the ignorance and stubborness that persists in this field?
Still, I thank those of you who are doing your best to get the word out.
If I hadn't been completely exhausted from dealing with the my daughter's illness, I think I might have physically assaulted him. Seriously, I have told everyone close enough to me to possibly have to deal with that hospital in the event that I'm in some kind of medical crisis that that particular doctor is to come nowhere near me. I wouldn't let that cro-magnon dick-brain tie my shoes.