In my last blog post, I described the end-of-treatment outcomes of my former patients (N = 30) with Anorexia Nervosa (AN). In sum, 57% of patients completed treatment (n=17) and 43% of patients (n = 13) did not complete treatment. The former group is referred to as “treatment completers” and the latter as “treatment non-completers.”
As expected, end-of-treatment results differed dramatically between the two groups. By the end of treatment, 94% percent of treatment completers had achieved full remission and 6% (n = 1) had achieved physical remission. In contrast, none of the treatment non-completers achieved remission, although 46% of them made significant progress (n = 6).
Bear in mind that I set the bar very high for my patients in terms of defining remission. In most published studies of AN treatment outcome, the patients whom I categorized as having made significant progress would be categorized as “recovered” or “in remission.” If I used the (completely inadequate) definitions of remission that other studies have used, a full 77% of my sample would have completed treatment and made a full recovery. But I digress.
These data clearly demonstrate that my approach to treating AN is effective. Patients with AN who have completed treatment with me always achieved physical remission and almost always achieved psychological and behavioral remission as well.
The 43% attrition rate is disheartening, given that patients are likely to achieve remission if they remain in treatment long enough. Attrition is a major problem in AN treatment in general, and in AN treatment for adults in particular. The validity of most AN treatment outcome studies is compromised by the high rates of attrition. It is not surprising that many adults discontinue AN treatment prematurely, given that treatment is very difficult, anxiety provoking, and lengthy.
This raises the question of what is “long enough” in terms of AN treatment? In my opinion, “long enough” is as long as it takes to bring the patient to full remission, which varies considerably based on individual differences. Among the treatment completers, the length of time to full remission ranged from 2 months to 4 years, with a mean of 17 months. The number of sessions attended by treatment completers ranged from 3 – 82, with a mean of 28 sessions. There were a handful of the young patients who achieved full remission in 12 sessions or less, although this was not the norm.
The rates of treatment completion versus non-completion in my sample beg the question of how these two groups differed. What was it that made treatment completers stick it out until the end, while the treatment non-completers either quit or regressed to the point that they required more intensive treatment? Cause and effect cannot be determined from this type of study. However, a careful examination of the similarities and differences between treatment completers and non-completers may yield useful information and hypotheses which can be tested in future studies.
The patients who completed treatment and reached remission differed in several important ways from those who discontinued treatment prematurely.
Variables That Had a Significant Impact on Treatment Outcome:
1.) Type of Treatment
In my practice, all children and adolescents under age 18 with AN receive FBT (Family-Based Treatment, also known as the Maudsley Method). Some adolescents also receive individual therapy as an adjunct to FBT after weight restoration. Some children and adolescents transition to individual therapy with me after FBT is complete; this may be the case for those who have comorbid disorders or other ongoing issues. Patients over 18 with AN are strongly encouraged to do FBT whenever appropriate, although it is not always possible for logistical reasons, and some young adults are staunchly opposed to it. In my sample, 66.7% of patients (n = 20) received FBT alone, 16.7% (n = 5) received FBT plus individual therapy, and 16.7% (n = 5) received individual therapy alone.
In my sample, all of the patients who received individual therapy alone were 20 or older. Six of the 11 young adults in my sample (n = 55%) participated in FBT, either alone or in conjunction with individual therapy. All of the patients under age 18 received FBT, and two of these patients also received individual therapy.
One-hundred percent of treatment completers (n = 17) received FBT, either by itself (n = 15) or in conjunction with individual therapy (n = 2). In other words, all patients who achieved remission did so through FBT. One-hundred percent of the patients who did individual therapy alone (n = 5) ended treatment prematurely, either because they moved (n = 2), they quit (n = 2), or I referred them to a higher level of care (n = 1). In other words, individual therapy by itself never resulted in treatment completion or remission.
2.) Subtype of AN
This sample contained 5 patients with the Binge-Purge subtype of AN (AN – BP) and 25 patients with the Restricting subtype of AN (AN – R). One-hundred percent of treatment completers had a diagnosis of AN-R. None of the AN-BP patients completed treatment.
Among the AN-BP patients, 2 were referred to higher levels of care after regressing during treatment with me. One patient moved to another state after making some progress in treatment with me. Two patients quit treatment prematurely after making significant progress with me.
The patients in my sample with AN-BP were more likely to have a history of impulsivity, self-injury, and suicidal gestures compared to those with AN-R. I hypothesize that this cluster of symptoms made these patients more difficult for me to treat effectively as an outpatient solo practitioner, and more likely to benefit from a more structured, comprehensive treatment approach such as day treatment or residential treatment.
3.) Age
On average, those who completed treatment and achieved remission were significantly younger at intake than those who did not complete treatment (p <.01). Treatment completers ranged in age from 10 – 24 at intake, with a median age of 14. Treatment non-completers ranged in age from 10 – 37, with a median age of 20. However, it is important to note that there was a broad range of ages in both groups, with some young adults achieving full remission and some children and adolescents discontinuing treatment prematurely. 4.) Fee Paid for Services I believe that neither finances nor insurance issues should prevent people from accessing high-quality healthcare services. Therefore, I do not participate on any insurance panels. I am flexible with my fees and I work on a sliding scale based on a patient's ability to pay. If a family’s financial status changes during the course of treatment, I will change my fee for them accordingly. I work with many patients for very low hourly fees. Thus, I can only assume that the patients who discontinued treatment prematurely did not do so for financial reasons. Among the patients in this AN sample, 87% (n = 26) paid my full fee and 13% (n = 4) paid a reduced rate. The rate of reduced-pay patients in this sample is significantly lower than in my other diagnostic groups. I hypothesize that this may be due to the fact that the majority of patients in this sample received family-based treatment and had at least one parent who was a working professional, or who at least was employed full-time. In contrast, many of my patients with other diagnoses were college students supporting themselves, who were therefore eligible for a low fee. In this sample of AN patients, those who paid a reduced rate were significantly less likely to complete treatment compared to those who paid a full rate. Only 25% of reduced fee patients (n = 1) completed treatment, versus 62% of full fee patients (n = 16). It is unclear why reduced rate patients were less likely to complete treatment. However, the reduced rate patients differed from the full rate patients in several important ways. First, and most obviously, they had lower incomes, and likely dealt with the host of stressors that accompany being of lower socio-economic status. Second, they were all over the age of 18, which statistically reduces their likelihood of full recovery. Third, they were more likely to receive individual therapy than the full-rate patients. All of the low-rate patients received individual therapy, either alone (n = 2) or in combination with FBT (n = 2). Observing my patients with other diagnoses, I have noticed that those who pay full rate are much more likely to attend all of their sessions and to complete treatment, whereas those who pay lower rates are more likely to cancel sessions, no-show for sessions, and drop out prematurely. While I’m sure that the reasons for these differences are complex, I can’t help but wonder if people who pay more for something tend to value it more and take it more seriously. Variables That Had a Minor Impact on Treatment Outcome:
1.) Length of illness before intake.
Among treatment completers, length of illness before intake ranged from 3 months to 13 years (mean = 27 months). Amongst treatment non-completers, length of illness before intake ranged from 3 months to 21 years (mean = 67 months). However, this difference was not statistically significant (t = 1.63; p = 0.11).
2.) Use of Medication During Treatment
Individuals who took psychotropic medication during treatment with me were somewhat more likely to complete treatment and achieve remission. Fifty-nine percent of treatment completers (n = 10) took medication during treatment, compared with 38% of treatment non-completers (n = 5).
3.) Ethnicity
This sample of 30 patients was comprised of 60% White Non-Hispanic individuals (n = 18) and 40% White Hispanic Individuals (n = 12). These percentages are roughly similar to the ethnic makeup of Coral Gables, Florida, the Miami Suburb in which my office is located. The treatment completers group was comprised of 71% White Non-Hispanic individuals (n = 12) and 29% White Hispanic individuals (n = 5). The treatment non-completers group included 46% White Non-Hispanics (n = 6) and 54% White Hispanics (n = 7). Therefore, White Non-Hispanics were slightly more likely to complete treatment and achieve full recovery than White Hispanics.
4.) History of intensive eating disorder treatment.
History of residential, day treatment, or intensive outpatient treatment had a minor impact on treatment outcome. Twelve percent of treatment completers (n = 2) and 23% of treatment non-completers (n = 3) had a history of residential eating disorders treatment prior to beginning treatment with me. Twenty-four percent of treatment completers (n = 4) and 31% of treatment non-completers had a history of partial hospitalization, day treatment, or intensive outpatient eating disorder treatment.
Variables that Had No Impact on Treatment Outcome:
1.) Comorbid disorders
The presence of comorbid disorders did not differ significantly between the two groups. Fifty-three percent of treatment completers (n = 9) had a comorbid diagnosis, as did 46% of treatment non-completers.
2.) Gender.
Given that only 7% of the sample was male (n = 2), I cannot draw any conclusions about gender differences in treatment response. Incidentally, both of the males in my sample achieved full recovery.
3.) Hospitalization before treatment.
Being hospitalized for AN or a related psychiatric issue prior to beginning treatment with me did not have a significant impact on treatment outcome. Thirty-five percent of treatment completers (n = 6) had been hospitalized at least one prior to beginning treatment with me, as had 31% percent of treatment non-completers (n = 4).
4.) Hospitalization during treatment.
The need for hospitalization during the course of treatment with me did not have a significant impact on treatment outcome. Eighteen percent of treatment completers (n = 3) needed to be hospitalized during the course of their treatment, compared with 15% (n = 2) of treatment non-completers.
These data, taken together, suggest that a patient with AN-R who enters treatment with me and receives FBT is very likely to achieve full remission within 28 sessions over the course of 17 months, regardless of gender, comorbid diagnosis, or history of hospitalization. A patient under age 18 has a greater likelihood of achieving full remission, although a patient over 18 is also likely to achieve full remission, provided that he or she is treated with FBT.
Please bear in mind that these results are specific to my practice and my patients. These data are not intended to be generalized to other clinicians or other patient populations.
How impressive that you are evaluating outcomes and using the results to guide your practice! You inspire me!
Curiously, did the non FBT group have the benefit of collaborating with a dietitian with eating disorder expertise? And would you say the non-FBT group with its higher average age also had lived with an untreated eating disorder for a greater period of time? No doubt this may also impact the outcomes.
Thanks for sharing your research!
Great questions, Lori.
I do believe that an RD with eating disorder expertise can be a very valuable asset to a patient; I just don’t have enough data yet to test that hypothesis. Of the 5 individuals who received individual therapy only (which you called the “non-FBT group”), 4 also worked with dietitians with eating disorder expertise. None of the individuals in FBT used a dietitian. Unfortunately, given the small number of patients who used an RD, and the fact that none of these particular patients remained in treatment very long, I can’t really draw any conclusions about the role the RD played in the patient’s outcome.
To your other point: I don’t doubt that duration of illness played a major role in treatment outcome. Duration of illness before intake ranged from 20 months to 21 years for the non-FBT group, with an average of 11.7 years. For the FBT group, duration of illness before intake ranged from 3 months to 13 years, with an average of 2.1 years. The non-FBT group had a longer average duration of illness, which certainly makes treatment more challenging.
On the other hand, there were some individuals in my sample who had suffered from AN for many years but still achieved complete remission. There is always hope, regardless of how long the person has been ill.
I applaud both the collecting and the publishing of your data. I would like to see others take this challenge and do so as well. I’d also like to see analysis comparing different providers and treatments and combinations of factors.
So much of what families have to evaluate treatment involves marketing and pretty promises. So much of the world of advocacy and the ED treatment community involves hiding from or downplaying the numbers.
I prefer facts and honest evaluation.
This is wonderful.
Thanks for this work Sarah. It was very interesting to see that individual therapy alone did not result in remission, which has been our experience too, in that we see pediatricians refer to individual therapists resulting in a delay in definitive treatment and poor weight outcomes. At Kartini Cinic we would never use IT alone, so we have no personal experience of this option. It was great to see yours.
I would also be interested in your analysis of the “non-completers” among the children under, say, 14— as children do not discontinue treatment their parents do. What, in your expeience, was the common reason for this?
Julie,
In my experience, families with children under 18 rarely drop out of FBT. There were only 3 under 18 FBT dropouts in this sample, and they ranged in age from elementary school to high-school. I don’t know why they quit – they never gave a reason. They just stopped scheduling appointments and I didn’t hear from them afterwards.
In all three of these cases, the child had made significant progress, but the family quit before they achieved remission. So it’s clear that treatment was working. My guess would be that one of two things happened: 1. The parents felt confident managing the child’s ED on their own and thus didn’t think they needed my guidance any more, or 2. The child refused to continue treatment and the parents abided by the child’s wishes. In my opinion, the former is a good reason to stop treatment while the latter is a poor reason.
Hi there, just wanted to mention, I liked this blog post.
It was inspiring. Keep on posting!
Anonymous
These are very impressive statistics, and I commend you for the courage and fortitude to collect the data and make public your treatment outcomes and observations. I suspect that your statistics challenge the status quo among non-FBT practitioners and residential treatment facilities such as The Renfrew Center.
In fact, in researching residential treatment facilities, I have not seen any similar publication of treatment outcome statistics. For example, and unless I’m mistaken, on its website, the Renfrew Center notes that it collects data for clinical research, yet I cannot find information about statistical outcomes or definitions on those outcomes anywhere. Also, on their page “Why Choose Renfrew”, they indicate that a person can expect a positive outcome without ever defining what that means. Their web site says, in pertinent part:
When you choose The Renfrew Center, you can expect:
…
Positive Outcomes: Our patients make progress. We conduct follow-up studies which indicate a significant reduction in the intensity of symptoms for the majority of participants in our residential programs. We know first-hand that recovery is possible and does happen, as it has for many of our patients.
How do they define recovery, and if you know, is their definition the same as your definition of recovery? Does anyone else publish statistics on treatment outcomes as well as define those outcomes?
Do you believe that you have a large enough sample size for your statistics to be valid and reproducible by other practitioners? In other words, is your data flawed because your sample size is too small or perhaps self-limited based on factors such as geography or the severity of the illness on intake? This presumes that you do not treat patients outside of Coral Gables, Florida and/or that you don’t treat individuals who are severely ill.
Next, have you informed all of your current and former patients and their families about your data and observations on treatment outcomes? Should your outcomes and findings be recommended or even required reading for all current and prospective patients and their families, or is it simply a curiosity that you have published as an interesting blog post to be forgotten next month? On the off chance, are you thinking of writing a book about your experiences, or do you think that you have nothing to add to the debates in the field?
Do you believe that you now have an obligation to inform current and prospective patients and their families about your statistics on treatment outcomes?
Is there a bias in the statistics towards FBT because you support and endorse such an approach as the best means for achieving a favorable outcome? In other words, does FBT work for you because you believe it will? Your statistics don’t strike me as being the result of a double blind study. You knew who was treated by FBT and who was treated with individual therapy. How do you account for your influence on the outcomes?
You have indicated in your posts and replies that there were a number of outcomes and findings which surprised you, and among these was the almost complete failure of individual therapy; the use of individual therapy seems to correlate with unfavorable treatment outcomes among your former patients. Do you plan on giving up individual therapy, or do you plan on notifying current and prospective patients and families regarding your finding pertaining to the correlation between unfavorable outcomes and individual therapy? Will you jettison individual therapy as treatment option in all, some cases, or most cases, and if so, what does that mean for any person who is being treated with individual therapy?
It appears that many, if not most, of the individuals who benefit from a reduced fee structure don’t actually benefit from either FBT or therapy. Why is that? Do you suspect that there is a correlation between treatment outcomes and economic situation? Put another way, is it less likely that patients will have a favorable outcome if they, or by association their family, are struggling financially? While you certainly may have good intentions by providing treatment on a sliding pay scale, is it possible that you are shooting yourself in the foot and/or possibly delaying the recovery of a patient because you are too damn nice? Yes, everyone deserves the opportunity to recover, but maybe you’re sabotaging the outcome by inadvertently signaling that your treatment has low value.
There is a place for charity and compassion, but perhaps in the interests of recovery, you should discontinue your offer of discounted treatment based on the financial circumstances of prospective patients or their families. At the very least, you can always maintain a balance owed on the books and decide to forgive all or part of the debt owed after treatment has come to a close, regardless of the outcome.
Keep up the great work Dr. Ravin.
Anonymous.
Anonymous,
You have raised many important questions and I fully intend to answer all of them. I will tackle just a couple of issues tonight and leave the rest for later.
To my knowledge, no other clinicians or treatment centers publish outcome data On remission rates. If anyone else publishes such data, I would love to see it and learn from it. The Kartini Clinic recently published data on percentages of their patients who were weight restored during treatment, which is a great start but isn’t equivalent to remission or recovery.
The paragraph you cited from the Renfrew Center’s website regarding “positive outcomes” is a perfect illustration of the problem in our field: practitioners and treatment centers are not transparent about their outcomes. If “many” patients achieve a “significant reduction in the intensity of symptoms” what the heck does that mean? Many patients could mean 10% of patients or 50% of patients. Reduction in symptoms – which symptoms, and how much reduction? The only conclusions I can draw from that quotation are that some people get a little bit better.
I have yet to learn of a definition of recovery or remission that satisfies me. Most definitions that are used in research studies are wholly inadequate. So I created my own definitions, which are both strict and comprehensive.
My results are definitely biased. This was not a randomized, controlled trial, and I never claimed that it was. This is simply the publication of one psychologist’s outcome data, with all of the confounds and biases therein, and it should be interpreted as such. My sample size is much too small and too self-selecting to draw definitive conclusions about a type of treatment in general, or about people with any particular diagnosis.
I will address your other points in soon.
Thank you for your thorough comment.
Anonymous,
I am back to address a few more of your points.
You wrote: “…does FBT work for you because you believe it will?” In psychological research, this is what we call an “expectancy effect.” It is quite likely that my strong belief in FBT made me more successful at delivering this approach as compared with my delivery of individual therapy for AN.
You raise a very interesting question when it comes to the differences in outcome between full-pay patients and reduced rate patients. It is possible, as you state, that the mere act of paying a lower fee for a service lowers the patient’s or family’s expectation, which in turn would have an adverse impact on recovery. It is also possible that paying a reduced rate is not in itself the problem, but rather it is a marker another variable that exerts a major influence on treatment outcome. Clearly, patients who pay reduced rates have lower incomes than those who pay full rates. Those of lower SES may have more stressors in their day to day life that makes them less likely to complete treatment or benefit from psychological services. My patients who pay reduced rates are, on average, more likely to no-show for appointments, more likely to cancel appointments at the last minute, and more likely to drop out of treatment prematurely compared with patients who pay full rate. This makes me wonder if reduced rate patients value treatment less, or don’t have their priorities in line, or have poor time management skills, or are generally irresponsible. Some or all of these factors are likely at play for most reduced rate patients. However, I have had (and continue to treat) some reduced rate patients who are very grateful for the opportunity to have treatment, who take their treatment seriously, and who have perfect attendance. For this reason, it feels morally wrong to deny someone the chance of recovering simply because they lack the financial means to pay for treatment, often through no fault of their own. I suppose a viable alternative would be to create some sort of reduced rate contract which clearly states that paying a reduced rate is contingent upon attending all sessions and making treatment a priority, and notifying the patient that if they do not meet these expectations consistently, then they will need to pay full rate or discontinue treatment with me. That seems fair, right?
Annonymous,
Yes, I was surprised at the complete failure of individual therapy this sample of AN patients. I will need to think very carefully about whether I will ever offer to treat another patient with AN using individual therapy. If a future patient is over 18 and unable to do FBT for some reason, I would definitely show him or her my statistics as a matter of full disclosure. I may agree to treat him or her with CBT-E, which has shown promise in this population (though not as much as FBT). I plan to continue to practice individual therapy with my patients who have mood disorders, anxiety disorders, and other types of eating disorders, as individual therapy is effective in these other populations. But individual therapy for AN is on its way out.
Dr. Ravin, thank you so very much for sharing your outcome data. This is the most valuable information a treatment provider can share, and I never see it it! You r data has raised some questions for me:
Of the patients with BP AN, can you share the percentage who received individual therapy and not FBT? I know it’s a small sample, but I want to understand the difference between this subtype of the illness and RAN in terms of response to treatment. Do you find this subtype doesn’t respond well to FBT in general? I would love if you could write about treatment response differences in general, even though that goes beyond the data. Were there any other differences with this group that could have impacted their lack of treatment completion? Does their lack of treatment completion mean that none of this group recovered physically (became weight restored)?
Iris,
I think that AN-BP can make FBT more challenging, but theoretically people with this diagnosis can respond well to FBT. The FBT Manual by Locke and LeGrange specifically states that FBT is appropriate for treating both AN-R and AN-BP.
Of the 5 patients with AN-BP in this sample, 3 received individual therapy only, 1 received FBT, and 1 received a combination of the two approaches.
I remember attending a talk by Chris Fairburn (a leading ED psychologist) two years ago. Fairburn was presenting a study on CBT for adult patients with AN, and he found that the presence of purging was a negative prognostic factor (meaning those with AN-BP were less likely to recover). When someone questioned this result, Fairburn hypothesized that it was not purging itself that made prognosis worse, but rather that purging was a marker for other things that made treatment more complicated. I believe the same is true in my sample.
I don’t think it was the subtype of AN per se that made my AN-BP patients less responsive to treatment. Rather, there were some major differences between those with AN-BP and those with AN-R in my sample which could account for this group’s lack of success. For example, those with AN-BP were older, on average (mean age = 25.6 years) than those with AN-R (mean age = 16.5 years). Only one AN-BP patient was an adolescent; the others were adults. Age can definitely make a difference in treatment response. In addition, several of the AN-BP patients in my sample had severe comorbidities involving impulsivity and threats to personal safety. These issues complicate treatment for obvious reasons.
All of the AN-BP patients in my sample discontinued treatment, for various reasons, before achieving weight restoration. None of them remained in treatment with me longer than 6 months. Two of them regressed and thus were quickly referred to higher levels of care; one moved to another state after making some progress with me and (presumably) continued her treatment there; and two dropped out of treatment after a few months, having made significant progress by the time they quit. While I can’t know for sure, I hypothesize that if the patients who quit treatment prematurely and the patient who moved away had remained in treatment with me for 12 months, they would have achieved full remission.
Dr Ravin, I frequently give out your blog as resources to parents of adolescents with EDs. The outcome data is impressive. Do you mind sharing what type of EMR or database you use to collect this data? Do you have a student help you and any advice to other clinicians if they would like to do this?
Melanie Jacob
Melanie,
Thank you for your kind words. I am glad that my blog has been helpful to others. I compile my data in a simple Microsoft Excel Spreadsheet. I hired a psychology student from the local university to assist with data collection. I think it would be fantastic for other clinicians to compile similar data, because it helps guide clinical practice and it can serve as useful information for potential clients and parents who are seeking treatment.
These data are brilliant, Sarah. I think the field would be so much better off with this level of analysis and transparency. And by that, I mean your version and not the Renfrew version!
Thank you, Carrie!
Dr. Sarah,
Thank you so much for revealing your outcome data.
I have the highest respect for you and your work.
You should be training other therapists and FBT’s in your method of healing and helping people achieve full remission.
You are a true gift to your clients and their families.
Hugs!
In FBT, it is parents and families, not professionals, who do most of the hard work. Perhaps it is they, not the therapist, who deserve to be acknowledged here.
Chris,
I agree completely. Families who do FBT work extraordinarily hard and definitely deserve the praise here.
Sarah,
When you do FBT for anorexia nervosa, do you include a family meal in your office as specified in the treatment manual written by Lock and LeGrange? If so, how are you set up? Do you have a dining table and chairs where the entire family, and you, can sit together and eat? What do the neighbors in your office building think of the yelling and crying as the anorexic kid is attempting to eat a meal? Are the neighbors able to hear through the walls? Have they asked you about this? Are you concerned about what
your neighbors in the building are thinking about what’s going on?
I’m just curious. Thanks
Chris,
I don’t generally do the family meal in my office. However, there is often quite a bit of screaming and crying in the early sessions of FBT when we work on re-feeding and weight restoration. Sometimes doors are slammed and things are thrown. Sometimes kids bolt from the office. There are about 10 other offices on my floor, and several of them are mental health professionals, so my office isn’t the only one with screaming kids. There’s a guy down the hall who treats trauma and another guy who treats autism, so there’s often a lot of screaming and crying from those offices. My neighbors understand that it comes with the territory, even if they don’t get the particulars of what I do.
Sarah,
When you say you don’t generally do the family meal in your office, does that mean you don’t participate in a family meal at all, or that you do it at a different location? Thanks
Chris,
I don’t generally do the family meal at all. Sometimes I do, but not usually. I tend to take my cues from what the family requests. When I have food in my office, it’s generally part of an exposure therapy protocol. For example, if a child has specific fear foods then sometimes we will do the initial exposure to that food in my office so that I can model the coaching around it as a first step towards parents serving it to their child at home. The philosophy behind this is very similar to the L & L family meal, though it’s not exactly the same thing.
Thanks Sarah. This is interesting. How many meals have you actually eaten with someone who was suffering from anorexia nervosa? Have you ever been the person with direct responsiblity for making sure the sufferer ate the entire meal, and did so day after day for a long period of time, i.e. several months? If so, I’d be interested in hearing what the experience was like for you. Thanks again.
Chris,
You ask how many meals I have actually eaten with someone who suffers from AN. I would say thousands, though maybe not in the context you assume. I worked in a number of different treatment settings during my training and shared meals and snacks with AN sufferers then. I was responsible for the sufferers’ meal completion in some of those situations. I have also had a number of people in my personal life, some with whom I was very close, suffer from AN, and I have shared many, many meals with them. I prefer not to go into specifics regarding my personal life. But I will say that I felt much more empowered and helpful as a clinician or a clinician- in-training sharing these meals as opposed to the helplessness I felt as a lay person without the knowledge or authority to make a difference.
Do you consider a parent to be a “lay person”? Do you think most parents are “without the knowledge or authority to make a difference”? Do you think most parents feel a “helplessness” when confronted with anorexia nervosa in their child?
Chris,
You wrote: “Do you consider a parent to be a “lay person”? ”
By “lay person,” I simply meant someone who is not a psychologist or other mental health professional. Maybe lay person was the wrong word. So yes, I would say that a parent who is not a psychologist or other mental health professional is a “lay person” by that definition.
You wrote: “Do you think most parents are “without the knowledge or authority to make a difference”?”
I think most parents initially believe that they are without the knowledge or authority to make a difference. The goal of FBT is to instill parents with knowledge and confidence and empower parents to take charge of the situation, giving them the authority to make a difference. I absolutely believe that parents can acquire the knowledge and tools they need to make an enormous difference in their child’s recovery. I think the reality is that parents have had the “authority to make a difference” in their child’s illness all along, but the myth-based advice they receive by ignorant clinicians, friends, and others makes them feel differently.
You wrote: “Do you think most parents feel a “helplessness” when confronted with anorexia nervosa in their child?”
I think most parents initially feel an enormous sense of helplessness when confronted with AN or any other illness in their child. This feeling of helplessness is often exacerbated by traditional AN treatment, where parents are told to back off. I think that parents who educate themselves on evidence-based treatment and who receive support from clinicians who empower them typically end up feeling like they can make a huge difference in their child’s outcome.
It’s hard to know whether most parents feel empowered — or helpless — when their kid initially develops anorexia nervosa. This is because most don’t seek treatment from professionals and therefore there isn’t any data. A new paper that will be presented this year at the annual meeting of the Eating Disorders Research Society, for example, reports that only about 30% of teenagers who exhibit symptoms of AN are treated by professionals. Sonneville, Treatment Seeking Among Eating Disordered Adolescents and Young Adults. We don’t know, therefore, what the majority of parents, representing the other 70% think. Most might feel empowered. Most might feel helpless. We simply don’t know. This is a large group of families, numbering in the millions, for whom we have no information.
I regularly meet parents and sufferers who don’t involve professionals in the treatment of their kids who have anorexia nervosa. Many of these people came from other cultures, where it’s not considered socially acceptable to seek professional psychotherapy. Many of these parents, who tend to be highly educated and devoted to their kids, don’t understand why, if the kid is underweight and not eating enough, the solution isn’t simply to feed the kid more food and regularize her patterns of eating. From all I can tell, these parents are achieving excellent outcomes. Their kids are gaining weight, eating normally, and families are not being disempowered and torn apart by the kinds of therapies that are being used in the U.S. at the present time. When I explain to these parents the mainstream thinking of American eating disorder therapists, they think I’m joking. The ideas of the psychodynamic theorists in particular amuse them. The ideas of the cognitive behavioral therapists strike them as common sensical, involving concepts already well known to most parents simply by virtue of the fact that they are parents. Many of these parents, after investigating the American system of treating anorexia nervosa, think it’s crazy. It’s hard to argue otherwise. There’s convincing data showing that most eating disorder professionals in the U.S. are mentally ill, emotionally burned-out, ill-informed, poorly educated, unable to be objective, stuck in dysfunctional patterns of thinking, and in many instances so afraid of anorexia nervosa that they are of little benefit. The financial burden on families of involving professionals is enormous, and there is no outcome data proving that the involvement of professionals is necessary or that it improves the probability of a good outcome.
Are these parents making a mistake by not involving professionals? Or are they wise and acting in the ultimate best interests of their children and families?
Chris,
I tend to agree that most, though not all, eating disorder treatment in the US in ineffective and crazy-sounding. I wouldn’t be surprised if the parents from other cultures that you mention have much better outcomes than ED patients in the US who receive professional treatment. I would also imagine that the parents in other cultures feel more empowered when their child develops AN than parents in the US. The common-sense thing for a parent to do is intervene to restore the child’s health by feeding him/her. I think parents are wise to educate themselves and make the best choices they can make for their child, given the options available to them. For some families, this means choosing wisely among the professional treatment options available to them. For other families, this means pursuing recovery without professional help. Whatever helps the patient recover is the best choice for that patient.
The website of the National Eating Disorders Association states that “People with eating disorders need to seek professional help.”
Is anyone aware of evidence that the involvement of a professional is, in fact, needed in order to recover? I haven’t seen any such evidence. At the same time, I’m aware of instances where children and teenagers have recovered because of the efforts of their parents, who have acted without the involvement of professionals. I’ve also seen many cases where sufferers from anorexia nervosa have involved professionals extensively in treatment and recovery has not resulted. It seems to me this statement by NEDA, which claims that professional help is “needed,” is therefore false. I believe the statement also tends to disempower and mislead parents, causing them to believe that professionals have special abilities and skills which, in fact, they don’t have.
Chris,
I am not aware of any scientific evidence that individuals with eating disorders need professional help in order to recover. I think that statement is accepted as fact by almost everyone, to the point that it doesn’t occur to people to question its validity.
Anecdotally, there are some individuals who attain “spontaneous remission,” meaning that they recover after many years of illness for no apparent reason, with no treatment and no help from family. We don’t know why this is, although some researchers suspect that it has to do with the prefrontal cortex, which finishes developing in the mid-20s. A lot of people with EDs tend to recover in their mid-20s, with or without treatment.
The same is true of alcohol and drug addiction. People with drug and alcohol problems are usually advised to “seek professional help,” even though lots of people recover without ever seeking professional help, and even though some people go to rehab dozens of times and never recover.
Like you, I have also seen many cases in which patients continue to suffer from EDs in spite of extensive “professional help.”
I think the spirit behind NEDA’s statement is that eating disorders are serious illnesses and people can’t “just get over it” on their own. I agree with that spirit, even though the statement itself may not be accurate. I do understand how the statement can feel disempowering to parents, and I agree that it is misleading.
The statement omits the reality that some “professional help” for eating disorders is evidence-based, but most of it is not. And the fact that some “professional help” works to empower parents to help their children recover, whereas most “professional help” does the opposite.
My impression is that most parents select a professional treatment provider and then go along with whatever kind of treatment the professional recommends. I think this approach is backwards. It’s better for the parents to do their independent research (www.pubmed.gov for example), use their common sense, select a treatment model they think will be best for their kid, then retain a professional provider (if any) to help them implement the model. This is the empowered approach, as contrasted with the “let-the-professional-take-care-of-the-problem” paradigm.
I think parents have an obligation to figure out how to help their kid recover from an eating disorder, and it’s actually irresponsible parenting to expect someone else to deal with the problem for them. If professionals had all the answers, it might be OK for parents to delegate responsibility to a professional. However, professionals actually know very little about how to select the best approach for treating AN for any specific sufferer, so any parent who relies too heavily on professionals is, in my opinion, acting foolishly and irresponsibly and not in the best interests of their child.