Part V UCSD EDC2014 Review

Next up in this review series of the UCSD Eating Disorders Conference of 2014 is Dr. James Lock. Many of you will know his name as he is one of the leading researchers of family based treatment and hails from Stanford University. He and his colleague Dr. Daniel le Grange have published numerous peer-reviewed papers that have solidified family based treatment (FBT) as an evidence-based treatment for restrictive eating disorders in children and adolescents. The subject of his talk was “FBT for adults and ARFID (avoidant/restrictive food intake disorder): clinical considerations”.

Next up in this review series of the UCSD Eating Disorders Conference of 2014 is Dr. James Lock. Many of you will know his name as he is one of the leading researchers of family based treatment and hails from Stanford University. He and his colleague Dr. Daniel le Grange have published numerous peer-reviewed papers that have solidified family based treatment (FBT) as an evidence-based treatment for restrictive eating disorders in children and adolescents. The subject of his talk was “FBT for adults and ARFID (avoidant/restrictive food intake disorder): clinical considerations”.

I should mention up front that when any of the speakers were referencing adults, they did not mean adults in the way you or I might mean it. It was one of the only disappointments for me when it came to many of the seminars throughout the remainder of the conference: that the majority of adults that I see and interact with are not the “adults” they refer to.

All of these clinician/researchers work with the tip of the iceberg— the sickest of the sick. The adults of interest to them are predominantly under the age of 25 and have, for the most part, not experienced any kind of independence or individuation from the family home in which they grew up (due to the severity of the restrictive eating disorder they face).

That is not to say that community-based and older adults are not on their radar, but the mortality risks for the sickest of the sick necessarily command attention. So for the remainder of this review, please keep in mind that the term “adult” refers to a subsection of the population with restrictive eating disorders. These individuals tend to still live at home, or remain dependent on their parents/guardians. They are most commonly between the ages of 19-25, although a few are in their early 30s as well. They have struggled with severe restriction and as a result have not met usual developmental markers that would have enabled them to make their own way in the world.

Dr. Lock showed us several graphs and research outcomes to confirm that recovery success is better when the patient is younger. It’s a steep slope down where recovery success rates are at 75% if the patient is treated before hitting the 3-year mark of active restriction (this won’t be counting the prodrome period by the way). It plummets to 40% by 4.5 years. The success rate then drops to 20% between 5-10 years. And from that point onwards the success rates for recovery are flat at about 10%. As Dr. Lock pointed out, remission is almost always defined crudely in the research outcomes (usually ideal body weight at 90%).

But part of the reason Dr. Lock believes that the success rates are so poor for adults is that there is no effective treatment available to them. Even for younger patients undergoing FBT, they generally don’t like the treatment. The attrition rate hovers at 50% for treatments involving CBT, FBT with or without nutrition therapy or SSRI interventions.

The decision to essentially re-tool FBT for adults was predicated on the fact that no other treatments have demonstrated effectiveness (evidence-based outcomes) for treating children and adolescents with restrictive eating disorders and these patients often remain living with the family of origin into adulthood. Furthermore clinical experience and some very limited research suggest FBT for adults can generate successful outcomes.i, ii

There are several areas of FBT that needed adjustment to better support these adults and of course it includes the necessity of negotiating treatment. Developmental variables have to be taken into account. As an example, it is not common for a 19 year old to eat with the family. Dietary advice for both the patient and the parents might be of more use for these patients. Siblings will not likely need to be involved as they are when the patient is much younger. Important relationships, such as boyfriends and girlfriends, might be included in the treatment plan. The dose will likely need to be greater.

“Dose” refers to the treatment sessions—10 sessions will not be effective and the framework of “I want you out of my office as soon as possible” will not provide the patient with enough reinforcement and practice to realize ultimate success. Additionally, individual cognitive and emotional work would be added (meaning that not all sessions would be family oriented).

The treatment providers have to help the patient tolerate parental involvement. Dr. Lock’s analogy was “If you put a shoe on that doesn’t fit, it’s going to be kicked off.”

Families are profoundly affected after 5 years of having a family member suffer with a restrictive eating disorder. Adults with this condition die, and medical surveillance is critical. FBT for adults is worth a try but the course will likely be uneven.

In many cases the families are no longer involved and the patient is estranged from his or her family, despite the fact that there may still be ongoing financial support.

At this point in my notes I jot down that “I like Lock”. It’s hard not to like a researcher/clinician who is so pragmatic and calls it as he sees it.

The second half of Dr. Lock’s talk focused on avoidant/restrictive food intake disorder (ARFID).

ARFID and FBT

A recap on this new DSM V restrictive eating disorder category as per Dr. Lock:

A disturbance in eating or feeding as evidenced by one or more of the following:

Substantial weight loss (or, in children, absence of expected weight gain)

Nutritional deficiency

Dependence on a feeding tube or dietary supplements

Significant psychosocial interference

The disturbance is not due to unavailability of food or to the observation of cultural norms. Nor can it be due to anorexia nervosa or bulimia nervosa and there is no evidence of disturbance in the experience of body shape or weight. The disturbance also cannot be better explained by another medical condition or mental disorder, or (when occurring concurrently with another condition) the disturbance exceeds what is normally caused by that distinct other condition.

What makes ARFID different than AN? Usually there is an acute identifiable trigger or chronic dietary habits. It usually presents in younger children. Its developmental course is long standing vs. acute. There is increased medicalization and different co-morbidities (AD(H)D, ASD, anxiety). I don’t necessarily agree with all of these differentiations, but really who am I to disagree against the likes of Dr. Lock?

More boys are impacted by ARFID— they are often called the “white bread boy eaters”. Anxiety and phobia features prominently and desensitization forms part of the treatment (exposure and response prevention). Sometimes parents don’t see a problem and even if they do, they might not be keen to face the problem down (likely because mealtimes have been a battleground already for some time).

When it comes to the application of FBT for those with ARFID vs. AN, the variations tend to be that the siblings might be less likely to be involved in treatment for ARFID; dietary advice will be offered to parents of a child with ARFID; any treatment of co-morbid conditions will be managed concurrently with ARFID; and the treatment dose will be much longer in duration for ARFID than for AN.

It is possible in patients with AN to be able to juxtapose life before AN took a hold of their world, whereas this is not possible for patients with ARFID.

In the following case study, Leila presents with ARFID. She is an 11 year old girl who has increasingly restricted her intake of solid food after choking on a hotdog at a school picnic. She complains of soreness in her throat, choking sensations on swallowing. She restricts intake to liquids, refuses to go to school and has had a weight loss of 8 kg in the past 2 months. She denies any weight or shape concerns.

Leila’s treatment would center on the fear of choking. In a tweet-chat just yesterday with Drs. Walter Kaye and Jessie Menzel on ARFID, Dr. Menzel stated “CBT, teaching relaxation skills and using systematic desensitization is applied to help individuals overcome food-related fears. CBT can also be helpful in teaching patients how to manage abdominal pain and other discomforts that might interfere with eating.”

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If any of you are interested and have an account on Twitter, you can search for #EDHChat to review all the questions and answers on the discussion of ARFID held January 29, 2015 hosted by Eating Disorder Hope.

In Dr. Lock’s final case study, he introduced us to “Sam” a 9 year old boy with a diagnosis of autism spectrum disorder (ASD). He is in mainstream schooling. He is active in sports and has friends. His diet consists of “white, soft, and sweet foods” since early childhood. He complains of the taste, texture, and smell of other foods. He is highly resistant to trying new foods. He is also below the 10th centile for weight/height and age. He wishes to be bigger and stronger.

Unmodified FBT has three distinct phases: 1) weight restoration 2) returning control of eating back to the adolescent 3) establishing a healthy adolescent identity.

When applying FBT for patients with ARFID, the emphasis is placed on phase one, and phases two and three have less or no emphasis in treatment, depending on the age of the patient.

Sam is young and he doesn’t see a problem. There are many challenges present in treating Sam. His involvement in sport may or may not complicate things. Whereas it would be more cut and dried for a patient with anorexia nervosa, the involvement in sport for Sam may not be reinforcing his restriction behaviors at all. In fact, his interest in sport may allow for treatment to be of some interest to Sam.

As Dr. Menzel pointed out in the above referenced tweet-chat, usually the treatment team is able to leverage something that the child would like in his or her life that is impeded by ARFID. Sometimes it can be as simple as the child would like to be able to eat pizza at a birthday party to fit in and be “more normal”. From there it will be feasible to generate some externalization and motivation for undergoing treatment.

Dr. Lock suggests that FBT for ARFID may be more suitable for patients that have developed the condition based on acute events and trauma (as with Leila above).

His concluding observation is one of those broad statements that reaches far beyond ARFID or FBT for adults:

“Disorders are ego-dystonic for the most part;

though anxiety and fear complicate motivation.”

The medical definition of ego dystonia is that the person finds his or her own thoughts, impulses or behaviors repugnant, distressing, unacceptable or inconsistent with self-conception.

I talk about this concept on the forums. I often suggest the usefulness of motivational interviewing therapy when a patient indicates that the restrictive behaviors offer benefits that make a recovery effort seem unattractive and not worth the effort. Anxiety and fear obfuscate the motivation to align one’s behaviors with one’s self-conception.

As an example, if I have a self-conception that I am not someone who willfully kills living creatures, then my propensity to use a glass and piece of paper to rescue and free spiders, wasps, or other insects that have entered my home aligns with that self-conception. If I accidentally step on an insect in my home, then I will experience ego dystonia— I have behaved in a way I find repugnant in relation to my self-conception. I will likely reduce that cognitive dissonance by rationalizing that it was an accident and perhaps might redouble my efforts to be careful to avoid an accidental insect death by my hands (or feet) in future.

If however, I develop a fear of insects, then I might squash the critters as soon as I happen upon them and I will attempt to deal with the ego dystonic reaction with more intense behaviors of avoidance along with more elaborate rationalizations and excuses for not aligning with my self-conception.

Fear is a ruthless taskmaster if it gets a foothold in your sense of self. For children with ARFID, the alignment of self-conception and behavior means addressing the fear and anxiety. Clearly that starts with the child identifying something they might like to do or be that ARFID blocks them from achieving. And that can be as straightforward as wanting to eat pizza or cake at a birthday party.

It is no different, although there are more sophisticated rationalizations present, for adults with any type of restrictive eating disorder. If your quality of life is impaired then chances are that your behaviors and self-conception are not aligned and it is fear and anxiety that is keeping you in that ego dystonic state.

i I Eisler, C Dare, GFM Russell, G Szmukler, D le Grange, E Dodge, Family and individual therapy in anorexia nervosa: A 5-year follow-up, Archives of General Psychiatry, Vol.54(11), pp.1025-1030, 1987.

ii C Dare, I Eisler, G Russell, J Treasure, L Dodge, Psychological therapies for adults with anorexia nervosa Randomised controlled trial of out-patient treatments, The British Journal of Psychiatry, Vol.178(3), pp.216-221, 2001.