I recently conducted an informal survey of parents who had used the Maudsley Method of Family-Based Treatment to help their children recover from eating disorders. My intention was to gather some preliminary data on recovery milestones which I could share with patients and families who are just embarking on the recovery journey. Then I realized that other people may benefit from this information as well.
The following data were collected from parents of some of my patients (past and present) as well as from parents on FEAST’s caregiver forum, Around the Dinner Table. A total of 22 parents submitted responses. The patients (20 female, 2 male) ranged in age from 10 – 24 years when their family started Maudsley (mean age = 15.3 years).
The patients in my sample varied dramatically with regard to the length of their illness. Some parents reported that they began Maudsley within a month after their child’s first eating disorder symptoms appeared. Other parents had watched their child continue to suffer from the devastating effects of ED through many years of ineffective treatment and numerous hospitalizations before finally turning to Maudsley as a last resort.
Granted, this is not good science, but it is a start.
Length of time from onset of symptoms to beginning of refeeding
Mean = 18.8 months
Median = 6.25 months
Range = 1 – 132 months
Length of time from start of refeeding to weight restoration
Mean = 6.7 months
Median = 4.5 months
Range = 2 – 24 months
Length of time from weight restoration to acknowledgement of having ED
Mean = 1.1 months
Median = 0 (acknowledged having ED when he/she became weight restored)
Range = 0 – 16 months
(90 % of the sample acknowledged having ED at or before weight-restoration)
Length of time from weight restoration to developing motivation to recover
Mean = 4.6 months
Median = 0 months (motivation developed at the time of weight restoration)
Range = 0 – 24 months
Length of time from weight restoration to eating independently while maintaining weight
Mean = 7.8 months
Median = 6.5 months
Range = 0 – 36 months
Length of time from weight restoration to mood normalization
Mean = 3.3 months
Median = 2 months
Range = 0 – 12 months
Length of time from weight restoration to normalization in anxiety (return to pre-ED level)
Mean = 6.5 months
Median = 3 months
Range = 0 – 36 months
Length of time from weight-restoration to absence of body dysmorphia
Mean = 6.9 months
Median = 4 months
Range = 0 – 24 months
Clearly, more rigorous research is necessary in order to draw definitive conclusions. However, I’ve drawn some preliminary conclusions based on my data:
1.) The Maudsley Method can be effective for children, adolescents, and adults. It can be effective for both males and females.
2.) The Maudsley Method can be effective even for young adults who have been ill for 10 years or more.
3.) Most patients who are beginning Maudsley treatment have anosognosia – they do not recognize that they are ill and do not have motivation to recover. The patient does not have to “want to get better” in order for treatment to begin.
4.) The majority of patients develop insight and motivation to recover around the time that they reach a healthy body weight. For some patients, insight and motivation develop gradually after a number of months at ideal body weight.
5.) Patients generally require continued meal support for an average of 6 months after weight restoration.
6.) The manualized Maudsley approach (Lock, LeGrange, Agras, & Dare, 2001) recommends beginning to hand control of eating back to the patient when she reaches 90% of ideal body weight. This is probably too soon for most patients.
7.) The majority of patients must sustain a healthy body weight for 3-6 months before depression, anxiety, and body dysmorphia abate.
This is interesting food for thought (pun intended). I am interested in conducting a much larger survey on families that have used Maudsley. I’d like to gather enough participants and enough data points to be able to do some actual complex statistical analyses – maybe some ANOVA’s or multiple regressions. Through this study, I’d like to examine which variables contribute to recovery time. For example, what features differentiate patients who are able to eat independently at weight restoration vs. those who need continued meal support? What differentiates the patients whose psychological symptoms melt away with weight restoration vs. those who continue to struggle? Most importantly, I would like to use data from this future study to find ways in which the Maudsley method could be improved.
What questions would you like to see answered? I welcome any and all suggestions!
I have a question about your #3; I can understand how someone who who does not acknowledge that they have a problem and does not want to get better can possibly begin to recover, if they are young enough to be under the control of their parents and are forced into treatment., but how is it possible for some one who is older and doesn’t want to get better to begin treatment and start recovery?
That didn’t come out very clear. I guess what I’m trying to ask is, if one is not ready for recovery and they don’t recognize that they even have a problem, how can treatment start? (especially if the person is over 18).
I don’t know if I want to “get better,” and I’ve been seeing someone for 3 years. How affective is it if I’m not willing to change?
PTC –
You raise an excellent question. The issues of insight, motivation, and readiness for recovery are pretty controversial in the ED treatment field. For many years, therapists believed that a person with an ED had to have motivation or insight in order to enter treatment, and had to “want to get better” in order to start recovering. Many professionals still believe this. I don’t.
My view, which is based on my understanding of the recent scientific research on EDs, is that anosognosia (inability to recognize that one is ill, lack of motivation to recover, lack of insight) is a symptom of the ED which is brought on by malnutrition or chaotic nutrition. By definition, people with EDs (especially AN) are resistant to change. I have never met a person with AN who expressed a strong desire to gain lots of weight and gladly, voluntarily prepared and ate high calorie meals. My view is that insight, motivation, and willingness to recover are a natural consequence of being in recovery, NOT a prerequisite for starting to recover. If we wait until a person with an ED develops insight and motivation to recover before helping them stop restricting, bingeing, or purging, and before helping them reach and maintain a healthy body weight, the person will most likely suffer for years before developing the insight and readiness. Many people won’t ever develop the insight and readiness, and instead will die from their ED or suffer from it for the rest of their lives. This is why the rate of recovery for EDs is so dismal. I believe that it is cruel to allow someone to struggle with serious medical and psychiatric problems for months or years when they have a treatable illness. My research and clinical experience has taught me that, if a person is pushed into recovery and given lots of support in resisting ED behaviors and attaining physical recovery, their mental recovery will soon follow. The converse never happens. I’ve never seen someone recover mentally in the absence of healthful nutrition and restoration of healthy body weight and function.
The Maudsley approach to Family-Based Treatment (FBT) does not require the patient to have any insight or desire to get better. Insight and motivation develop later, after months of healthy nutrition, when the patient is well enough mentally and physically to begin to tackle their emotional issues. For children and teens 18 is legally in charge of her own healthcare decisions which, in my opinion, is not always in the best interest of the patient, especially if she has an ED. Parents who wish to use FBT with their young adult children usually have some financial leverage which they can use to push their child into treatment. For instance, parents may refuse to pay for college until their child goes through FBT, reaches a healthy body weight, and is abstinent from all ED symptoms. This may sound cruel or controlling, but in my opinion it is the kindest thing. College is the absolute worst place for a person with ED. The patient can always return to college the following year, once she is in good health and is ready for the academic and social challenges of college life.
Part of therapy involves enhancing motivation for change. There is a technique called “motivational interviewing,” which was developed for people with substance abuse issues to help them develop the insight and motivation to enter treatment. This technique can be used in EDs as well.
Adult patients can be ambivalent about recovery and still start taking steps toward recovery if they have loved ones and professionals who support them, who want recovery for them. A patient doesn’t have to want to get well 100% of the time in order to make pro-recovery decisions. They just have to take a leap of faith and trust their professionals and loved ones to help them get weight restored and / or stop binge/purge behaviors. Support during and after meals is extremely helpful in this regard. Desire to recover comes later.
So, to answer your question “I don’t know if I want to “get better,” and I’ve been seeing someone for 3 years. How effective is it if I’m not willing to change?” You do not need to want to get better in order to start recovering. You DO, however, need to make sure that you are consistently well nourished, your food stays down, and you reach and maintain a healthy body weight. It is extremely difficult for most people to do this alone. You will need a great deal of support from your treatment team as well as those in your personal life who can help you achieve physical health. Without that, it may be years before you “want to get better,” if ever.
I wish you all the best in your recovery. This illness is horrible, but it is treatable and beatable.
I would be very interested to see if there are differences in the above based upon the age of the sufferer and length of disease. My child was diagnosed at 12 and recovery to date has been uncomplicated. (Fingers crossed!)
Thanks Dr. Ravin!
Your second paragraph, especially the first few sentences is dead on. I’m definitely not jumping at the chance to gain weight, in fact, gaining just a pound freaks me out. I’m on my second week of only weighing myself once a week, which is huge for me since I weighed myself several times a day. It’s scary and I constantly feel like I’m gaining weight, and maybe I tend to “restrict” a little because of that, but the first week went okay and I didn’t gain any weight.
I’m constantly told that I am not “well nourished” by my therapist, but I live alone and don’t need to eat unless I want to. I guess I fall into the category of “it may be years before I get better, if ever.”
Columbia and the University of Chicago did a nice open trial of FBT. Page 19 here shows bmi over time in that study http://www.maudsleyparents.org/images/D_le_Grange_Oct_5_Conference.pdf (The vertical lines indicate the three phases of FBT.)
Looking at data from that study, Doyle et al http://www.ncbi.nlm.nih.gov/pubmed/19816862 found that weight gain by session four predicted remission. In addition, males, short duration of illness and sub-threshold diagnosis were more likely to remit (highlighting the importance of early intervention.)
There’s still a long way to go but the influence of some factors is beginning to emerge.
1. Single-parent families did as welll as two-parent families using FBT to help their kids with bulimia. http://www.ncbi.nlm.nih.gov/pubmed/18720474
2. In the earliest FBT study younger patients did better than older patients, but subsequent older adolescents did as well as younger ones.
3. Families with higher levels of criticism seemed to do better with separated, rather than conjoined, FBT http://www.ncbi.nlm.nih.gov/pubmed/17537071
The publication of the multisite FBT study due out this fall will add to the body of knowledge.
Manualized FBT shows good results in studies so I’m wondering if the 90% IBW as a guideline is problematic for most patients. It’s probably worth noting that weight gain is not the sole criteria for moving ahead. (Le Grange and Lock: “The patient’s acceptance of parental demand for increased food intake, steady weight gain, as well as a change in the mood of the family (i.e., relief at having taken charge of the eating disorder), all signal the start of Phase II of treatment.”) My guess would be that families working with trained experienced FBT therapists (who are in very short supply) would have more success making the gradual transition to independence. It seems to me that the are a number of ways this can go wrong (abrupt change from total supervison to none or not monitoring weight weekly to address backsliding promptly, for example.)