Part Five: UCSD EDC2014 Review
Family Based Treatment For Adults and Avoidant/Restrictive Food Intake Disorder
Dr. James Lock spoke on FBT for adults and A/RFID. 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 eating disorders in children and adolescents.
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 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 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 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.[1],[2]
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 an 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 their 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 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 from 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 with 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 centre 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.”
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.
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.
