When—NOT IF- Parents are Partners

 

Having just returned from Renfrew’s 20^th Anniversary conference, I’m filled with good spirit and inspired thoughts having been surrounded by such a remarkably smart, challenging and creative group of colleagues.  If you have yet to attend one of Renfrew’s conferences, don’t miss it next year.  The conference is not just a nexus of information, but it is an anchor of heightened professional exchange and support. It’s also always fun!

And of course I’m left with many thoughts.  Not surprisingly, the role of family-based treatment took center stage at many points during the conference.  It was interesting to learn that, once research is parsed though, FBT actually only has about a 40% cure rate.  But it is seen as the frontrunner in terms of therapeutic options because indeed when it does work, it is significantly cheaper than any other treatment around (one therapist, seen 20 times yearly, with big insurance backing for the expenditures). The finances, if nothing else, make this treatment extremely compelling.

That being said, I have many families who could never take the time off from work to sit with their son or daughter through months of meals.  That would be more costly than any possible treatment solution.  Hiring a full time nurse or aide is a possibility—again, finances would have to be assessed.

The problem for me is not that FBT isn’t effective.  I think research certainly has demonstrated that it CAN be—in certain specific situations.  Certainly, FBT has addressed one of the most significant gaps in the treatment arena—that is, how parents can be of support in the therapeutic process.  What concerns me though is that clinical experience with eating-disordered patients has shown that other kinds of parental involvement can result in symptom reduction, abatement and change.  I’m talking about a treatment in which parents don’t directly re-feed their kids but are involved in other ways.  Here, a nutritionist, therapist and physician determine how much weight the patient needs to gain each week (in the case of anorexics) and the parents are supporting these efforts. often by unemotionally insisting on consequences if the weight is not gained (i.e., withdrawal from sports, withdrawal from school, etc).  Exploration of family and individual dynamics at this point can help families deal with issues such as  1)coping with the intense frustration that is inevitable at this stage of treatment, 2) expressing anger constructively and 3)fine tuning the best ways for parental involvement.

Parents and clinicians alike would benefit from studies in which FBT is compared to studies in which FBT is compared to other family involvements even when parents don’t specifically feed their child.

We have much to learn from each other.  Take a look at Treatment of Eating Disorders: Bridging the research-practice gap (Maine, McGilley and Bunnell, 2010).  It’s challenging and thought provoking place to start. As clinicians, we had better get going in documenting effective treatment practices. As researchers, let’s pay attention to what we aren’t documenting but may be proving despite ourselves (i.e., that parental involvement is critical, but it may be unclear just what about the involvement is helpful).  What we do know is that parents need to be our therapeutic partners.  Just how that should be remains the question at hand.   jb

Comments

[Anonymous]

There's more than family-based treatment than re-feeding and monitoring meals. I'm puzzled by your characterization of "other kinds of parent involvement" as these are often elements of Maudsley treatment. Unfortunately, FBT is often misrepresented as a simple refeeding regimen. The treatment is not shallow, but understanding of the approach often it.

Currently there are fewer than 20 trained and certified family-based treatment therapists in the entire country. The treatment is widely unavailable. I surprises me to hear that this treatment is "not for everyone" when 1) no one says that it IS for everyone and 2) most people who want this treatment are unable to find it.

There ARE current studies underway looking at which factors and types of involvement are most helpful. There's a five-site study comparing structural family therapy to family-based treatment. Eating disorder research is a young field and there's a lot to be learned. IMO that's not a reason to ignore what studies have shown so far. Currently, FBT looks like the best bet for adolescents who are medically fit for outpatient care, yet few families have access to it. (You're right that full remission with FBT isn't as high as anyone would like, but it's twice as effective as adolescent focused therapy. It's worth noting that the standard for full remission was high. If Morgan-Russell criteria for good outcome are used (as they were in earlier studies) outcomes look even better. Partial remission was achieved at a much higher rate. It's to the authors' credit that they hold their work to such a high outcome standard.

Treatment researchers ARE clinicians and typically see patients both in studies and outside of them. I think it's a mistake to view this as two camps.

In my experience there was not "big insurance backing" (LOL) for my family's FBT expenses during my daughter's illness. It was costly in a number of ways (including temporary lost income) but we judged this as worthwhile. With early aggressive treatment anorexia nervosa cost my daughter less than it would have had the illness dragged on for years. Further, I would note that not all (or most) families have to take "months off work."

It's worth looking carefully at outpatient options for eating disorders, especially since so-called "higher levels of care" don't show impressive long-term results and are, of course, very expensive and disruptive to a child's life and development. http://www.ncbi.nlm.nih.gov/pubmed/20334748

[Anonymous]

Will you cite a source for your statement about costs and insurance being responsible for FBT being "seen as the frontrunner" ? (How a treatment which is seldom available can be the frontrunner is beyond me.)

It's really worth looking at all the available research. There isn't anything that's been studied that outperforms FBT. Clearly, there's a need for additional research (and it is ongoing) but to suggest that there's something with more empirical support that's overlooked because FBT is cheaper is flat out wrong.

Also, FBT patients are never seen solely by one therapist. A pediatrician or adolescent medicine specialist is always included on the team. A psychiatrist may be involved as well if medication is used as an adjunct.

[Judith Brisman, Ph.D]

Thanks for the clear and articulate postings above. This kind of information allows us all to have a broader understanding of the issues we are discussing. Readers should know that I'm somewhat of a skeptic when it comes to research in general, knowing results can fluctuate back and forth dramatically (think research on estrogen or breast cancer). But in terms of the comment: "there's something with more empirical support that's overlooked because FBT is cheaper is flat out wrong". There is a misunderstanding here-- there are other studies which lend more information to the FBT studies, some even contradicting the findings-- but this has nothing to do with studies being overlooked because FBT is cheaper.
An overview of research in a variety of arenas is well covered in Treatment of Eating Disorders: Bridging the research-practice gap (Eds)Margo Maine ), Beth Hartman McGilley), Douglas Bunnell, 2010.

With regard to insurance companies-- they like this modality because it is indeed cheaper-- less clinicians are involved overall, even if other professionals are part of the treatment. No doubt coverage in general remains extremely problematic but the possibility of less sessions is important to consider for anyone involved.
I want all readers to know that I think it is extremely important for everyone to know about FBT and to make sure patients are given the possibility of that route in terms of treatment. The FBT researchers-- and yes, clinicians-- have added tremendously to our field. I just want to make sure that other reliable and effective means of treatment are not thrown out as soon as a new direction is considered. In this wide arena of family situations, we all need to have many possible interventions available and we need to be thoughtful about what works best in each individual situation. The comments above were thoughtful. I appreciate learning more. jb

[Anonymous]

In your original post you said, "But it is seen as the frontrunner in terms of therapeutic options because indeed when it does work, it is significantly cheaper than any other treatment around..." To me, you seemed to be arguing that FBT was viewed as the best alternative mostly because it was less expensive, and I disagree.

Firstly, in addition to therapist visits, FBT always includes medical consultations (I would hope this would be true of any therapy for anorexia or bulimia) and may involve a psychiatrist as well. To say it's just 20 therapists visits isn't quite accurate.

Any outpatient therapy is likely to be less expensive than inpatient. I imagine that most people would prefer to keep kids out of the hospital if possible.

I know families who have asked for and been denied coverage for FBT by insurance companies because it was deemed "experimental." I've never heard of an insurance company pushing a family to do FBT against their wishes. (They would have an extremely hard time if they did, as there are so few family-based treatment therapists.)

The Agency for Healthcare Research and Quality did a comprehensive report a few years ago (before the recent study) on eating disorder research. I think it's an excellent resource for anyone who interested in where the field stands. http://www.ahrq.gov/downloads/pub/evidence/pdf/eatingdisorders/eatdis.pdf
(It's a big document and takes a while to load.) Overall, the picture is pretty depressing with very few interventions for anorexia showing much promise. (This is especially true for adults.) I think it makes sense to evaluate studies by looking at each carefully as quality is variable. It can be a mistake to say "research shows us this" or "research doesn't address that." There's a lot of benefit of going to the source(s) and evaluating for oneself.

Skepticism is a good thing. In fact, that's one of the most positive aspects of research. It's a process of constant ongoing questioning. With each well-designed, high-quality study more is learned. Ideally, knowledge builds and understanding evolves. I think it's a misperception that researchers are rigid. To the contrary, research requires curiosity, an open mind and a willingness to put one's theories to the test.

I've never heard anyone involved in FBT research suggest "throwing out" other treatments. In fact the authors of the recent FBT study suggest that adolescent focused therapy may be a reasonable option for families who could not, or preferred not to, engage in FBT. And research is never really "done." There is always more to be explored, especially in the case of eating disorders where understanding lags behind many other psychiatric disorders.

Aside from the recent study there have been a number of very good papers over the last decade or so that look at various aspects of FBT (cost effectiveness, manualization, therapist training, the role of therapeutic alliance in this treatment.) I think it's an area with some energetic people doing some really good work. I think you and I would probably agree that there's a lot that research doesn't yet tell us, but I also think It's an exciting and optimistic time.

[Judith Brisman, Ph.D]

just a quick comment for the moment -- again I appreciate the thoughtfulness of the recent comment. One thing I want to emphasize is that I agree that it is not the researchers who are throwing out other options. It is the way the research can be interpreted that can lead to throwing out other options. In general, in any field, we look for answers. The FBT research has left us with new directions to seriously consider. That it has opened more routes to question-- and not that it has given us the answer-- is one of the most valuable results of these studies. I'll be sure to think about your comments more and I'll try to respond in future blogs. jb