84 meals, 56 snacks
A post with more question marks than my editors would ever have allowed:
At first I hesitated to comment on "Early response to family-based treatment", out of fear that it would discourage vulnerable families pursuing Maudsley treatment. One thing I've noticed is that it takes a tremendously optimistic environment for parents to do FBT. But: knowledge is power.
We already know that early response to treatment indicates with some accuracy who will respond to inpatient treatment (goes for AN, BN and BED). In this randomized controlled trial, "Weight gain by Session 4 of FBT predicts remission at post-treatment in adolescents with AN in a clinic
sample."
This is an important clue to the strengths and the weaknesses of a family-based approach - at least as manualized and currently practiced. I can imagine many scenarios: that some patients have illness too intractable to respond; that families who are well-suited to this task will come through early; that families unsuited to this show that early; that the method is simply too inflexible or underpowered to cover the full range of families and illness in need, or that this approach is simply wrong for a percentage of families. We could theorize all day, and I'm sure we all will.
I take from this that families who are not making progress after the first month need another alternative. It is also my sense that many families need a LOT more help than they are getting to be successful at home-based re-feeding. I look forward to data on what happens in terms of long-term prognosis for those patients who do not respond early to FBT. Do they go on to worse outcomes regardless? Do they thrive with some other intervention? What IS the alternative?
I'm left with the continuing question of what the active ingredients in FBT really are, and which of them fail these families. I wonder what parts of FBT will then be discontinued: nutrition, family involvement, separating the patient from the illness, symptom focused treatment. If all the alternatives to FBT are in opposition to the principles of FBT then how will we know what works and why? Is this about FBT being the wrong direction or too lightly applied? What if FBT was done in a whole-family way IN the hospital or more intensively (as is done in 5-day intensive programs)?
Yes, my heart hurts at the parent reading this information who has struggled with a home-based approach and now feels defeated in the hardest and bravest thing he or she has ever done. Yet I do not wish for families to continue to struggle fruitlessly. We can't ignore or wish the data away - these are some of the best researchers in the business - but until we know of viable alternatives we do need to continue to ask: if not Maudsley, then what?
At first I hesitated to comment on "Early response to family-based treatment", out of fear that it would discourage vulnerable families pursuing Maudsley treatment. One thing I've noticed is that it takes a tremendously optimistic environment for parents to do FBT. But: knowledge is power.
We already know that early response to treatment indicates with some accuracy who will respond to inpatient treatment (goes for AN, BN and BED). In this randomized controlled trial, "Weight gain by Session 4 of FBT predicts remission at post-treatment in adolescents with AN in a clinic
sample."
This is an important clue to the strengths and the weaknesses of a family-based approach - at least as manualized and currently practiced. I can imagine many scenarios: that some patients have illness too intractable to respond; that families who are well-suited to this task will come through early; that families unsuited to this show that early; that the method is simply too inflexible or underpowered to cover the full range of families and illness in need, or that this approach is simply wrong for a percentage of families. We could theorize all day, and I'm sure we all will.
I take from this that families who are not making progress after the first month need another alternative. It is also my sense that many families need a LOT more help than they are getting to be successful at home-based re-feeding. I look forward to data on what happens in terms of long-term prognosis for those patients who do not respond early to FBT. Do they go on to worse outcomes regardless? Do they thrive with some other intervention? What IS the alternative?
I'm left with the continuing question of what the active ingredients in FBT really are, and which of them fail these families. I wonder what parts of FBT will then be discontinued: nutrition, family involvement, separating the patient from the illness, symptom focused treatment. If all the alternatives to FBT are in opposition to the principles of FBT then how will we know what works and why? Is this about FBT being the wrong direction or too lightly applied? What if FBT was done in a whole-family way IN the hospital or more intensively (as is done in 5-day intensive programs)?
Yes, my heart hurts at the parent reading this information who has struggled with a home-based approach and now feels defeated in the hardest and bravest thing he or she has ever done. Yet I do not wish for families to continue to struggle fruitlessly. We can't ignore or wish the data away - these are some of the best researchers in the business - but until we know of viable alternatives we do need to continue to ask: if not Maudsley, then what?
I read this too just this morning and I had same thoughts of parents may throw in the towel too soon here.
ReplyDeleteTHere are so many variable and puzzle pieces to try to fit together and work through.
Those first few months were the hardest. What about those who do the inpatient treatment centers and gain so quickly only to come home and relapse?? What does this say to a family?
We just kept plugging and plugging day by day. Of course we kept up with her doc appointments and moitored physical.
For our d, it was the "added layer of treatment" that has made a difference.
DS
"Is this about FBT being the wrong direction or too lightly applied?" - well you probably know my answer to that one! A couple of newly appointed therapists with a manual does not make a professional team unless the parents are VERY competent and clued up and/or the medical and psychological situation very straightforward.
ReplyDeleteI can't open the link to the research here (because my computer is over-protected by a helicopter administrator) but I will try it later when I hope that I will find that the authors intend to suggest offering those families who fall at this first fence more support, rather than withdrawing it still further.
I think that many of the basic tenets of FBT - nutrition, family involvement, separating the patient from the illness, symptom focused treatment - are absolutely essential to e.d. recovery. And, many treatment centers and methodologies do have all of these components. Increasingly, people with many different viewpoints on treatments are recognizing the importance of these components.
ReplyDeleteI think, however, that some patients and families need *more.* Perhaps they needs some specific skill-based training such as DBT, or maybe they need to do trauma work, or maybe they have deep psychological reasons behind their e.d. that they need to sort out, or maybe they need a more private recovery experience.
No treatment works for everyone, and I think that's okay and does not need to be disheartening. We all just need to be open to the idea that there are many viable treatment options out there, and not lose hope when it takes more than once to find the right one.
I also feel that I must point out that if clinicians have been using Maudsley straight from the manual the patient may well not have eaten anywhere near 84 meals and 56 snacks as clinicians do not give specific advice about food and encourage parents to work out how to re feed their child for themselves - which is fine and dandy when they do, but not so good when they struggle and could do with a bit of specific advice. Can you tell that I'm fascinated with this one?
ReplyDeleteWhen Dr. Le Grange was talking about this paper at the Maudsley Parents conference, he mentioned that part of the goal of making these predictions is to try and figure out early on which families are going to need more support. He said he hopes to develop a type of "FBT Plus" to provide that extra support, rather than waiting until later in treatment for the difficulties to become more obvious.
ReplyDeleteI hope it will be used as a way to kind of spur families forward in getting started and staying firm against ED, especially in those first few weeks when everything is so hard.
But my ultimate response to FBT and other therapies is this: unless you or your child start eating and gain weight, they will not get better. And the sooner they gain weight, the better the prognosis. It's going to be miserable, so you may as well get it over with.
I think you are correct Laura - if not this what? But I also think there needs to be a recognition of the spectrum of ways the disorder can present - for my d it stripped her normal life so that initially when I said nothing else happens till you eat well nothing else was happening the disorder had descended so fiercely. The line 'this is your medicine and you will get it if you can't manage to take it' only works if there is a hospital that supports this - this is where FBT can fall down for families - not in their determination but in the back up to the hard stance they are trying to take.
ReplyDeleteThat needs to be investigated as much as whether the families or the patient are too ill or not strong enough to see it through.
"He said he hopes to develop a type of "FBT Plus" to provide that extra support, rather than waiting until later in treatment for the difficulties to become more obvious."
ReplyDeleteWonderful! This to me, as someone who was there at one of these fourth sessions pleading for more help because we were finding it so hard, and feeling utterly terrified and condemned by the "you're obviously not trying hard enough" approach of the therapist (I've since come to like and feel very grateful towards the therapist as an individual but I'm still very angry at the system that left him with nothing but manual in the face of a terrified family whose fear came out as anger and self-destruction).
FBT as it is, straight from the manual, works in more than 50% of cases but no good clinician (and the authors of this paper are EXCELLENT clinicians) is going to leave it at that.
Keep gathering the evidence researchers, keep applying it clinicians, and keep publicising it and encouraging others Laura and Carrie.
hey, Dr Paul Rhodes here from Sydney, great work your doing on this blog, myself and my student Rani Ellison are currently researching a topic you have mentioned, ie: what are the active ingredients of the Maudsley, I agree that this is critical if we are to know how to augment it without destroying it's core ingredients, we are looking at parental control, externalisation, sibling support, parental team work, our analysis so far shows that parental control is the critical central ingredient, still more analysis to go, should be submitted for publication march 2010, out maybe November 2010..
ReplyDeleteGreat to hear about your research Dr Paul (and by the way I love the fact that you blog about something completely different - academics and parents alike DO have outside interests!)
ReplyDeleteI will be on the look out for the results of the study. If you can tell us before it's been fully evaluated and published, are the subjects of the study families with children with restricting AN, or have binge-purge features of the illness been studied alongside restriction?
Hello, Paul!
ReplyDeleteParents reading this will want to know how to define "parent control."
You know how "controlling" we are!
Laura