Improving Clinical Competency in Treatment
“Improving the Odds: Clinical Competency in Eating Disorders Treatment,” was an apt theme for many sessions presented at the 2017 International Association of Eating Disorders Professionals (iaedp) Symposium, March 23-26 at the Green Valley Resort and Spa, Henderson, NV.
In a special keynote presentation, “Making Sense of the Complex Eating Disorder,” a panel of 5 ED experts addressed some of the most critical issues facing eating disorder patients today. Ovidio Bermudez, MD, Chief Clinical Officer and Medical Director of Child and Adolescent Services, Eating Recovery Center, Denver, and Clinical Professor of Pediatrics at the University of Colorado School of Medicine, moderated the discussion. Each panelist selected the topic he or she felt was of the greatest urgency in current eating disorders treatment.
The Need for a Better Definition of ‘Recovery’
Craig Johnson, PhD, Chief Science Officer and Co-Director of the Family Institute at Denver’s Eating Recovery Center, expressed his concern about the increasing practice of adopting harm reduction models for treatment-resistant patients. As an alternative, he cited the encouraging work of the government’s 10-year, billion-dollar Brain Activity Map project, which holds promise for patients with Alzheimer’s disease, Parkinson’s disease, and eating disorders. [Also see the article, “Transcranial Direct Stimulation for Bulimia Nervosa,” elsewhere in this issue.]
A synthesis of several recent studies is clarifying appropriate definitions for recovery and the need for a longer duration of follow-up, according to Dr. Johnson, a founding editor of the International Journal of Eating Disorders, and co-founder of the AED annual conference. For example, he pointed out that, in a 10-year follow-up study using Morgan-Russell criteria, 83% of patients met full criteria for recovery.
Approximately 28% of AN patients continue to have chronic or severe disease after 10 years, Dr. Johnson said. He also asked the audience to consider the patient’s age at first diagnosis and the sequence of recovery over time. For example, a 12-year-old diagnosed with AN would only be 22 years old and in the midst of her disorder when she would fall under the 10-year rule. In several studies by Steinhausen (2002 and 2009), Keel (2010), Berkman (2015) and most recently by Eddy et al. [see article elsewhere in this issue], a clear pattern of recovery emerged. After fewer than 4 years of treatment, only 33% of AN patients were recovered, but 73% had recovered after more than 10 years of treatment. The important point here was that half of the recoveries occurred after 10 years of treatment, said Dr. Johnson. Current harm reduction recommendations do not challenge weight recovery after this time, he noted. Dr. Johnson also reminded the audience that the human brain can’t make use of mindfulness-based treatments until the early to mid-20s.
Dr. Johnson said he is “psychotically enthusiastic” about patients, and added, “We think it is possible to help patients over a longer period of time.” He also is optimistic about advances in treating brain-based illnesses that require brain-based interventions. The federally funded Brain Mapping Project will ultimately provide a detailed map of the human brain. So far, the use of deep brain stimulation, or DBS, has helped substantially improve mood and disordered eating behaviors in half of patients treated. Dr. Johnson also noted that harm reduction strategies can be thoughtfully done, but not at the expense of hope for improvement and ultimate recovery.
Beth Hartmann McGilley, PhD, FAED, CEDS, a clinical psychologist, author, sports medicine expert and clinical associate professor at the University of Kansas School of Medicine, Wichita, told the audience that after 50 years of quantitative research on ED outcomes, with extensive data, there are still no meaningful criteria to define “recovery” from an eating disorder. Without having a consensus definition of recovery, it is impossible to compare treatment effectiveness, she said, leaving a dangerous ambiguity around the treatment goals providers are aiming for.
The lack of a clear definition of recovery also leaves patients and families in the lurch, confused by treatment goals and about when to expect recovery. Another important group—recovered eating disorders professionals (like Dr. McGilley) and their employers—are left without guidelines or definitions of recovery for their “readiness” to enter the field. So, she said, an important question is, “When is our job done?”
Dr. McGilley said that in studies of recovery, many patients are also left out of the literature, including children, males, those with binge eating disorder (BED), and members of minority groups such as the gay and transgender communities. The literature also is lacking when only physical parameters are included, and the criterion for recovery is abatement of symptoms for as little as 3 months. She added that research and recovery data are quite sparse, and recovery data are only available for AN; current guidelines for abstinence and physical exercise are also missing.
She pointed out a study by Bardone-Cone et al. (2010) that examined several parameters to define full recovery, including no longer meeting Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria for an eating disorder (AN, BN, EDNOS), having no symptoms of an ED during the past 3 months (binge eating, purging, fasting), having a body mass index (BMI, kg/m2) of 18.5+, and having EDE-Q scores within 1 SD of age-matched norms. The problem, Dr. McGilley added, was that with such a definition, the length of symptom abstinence may be too short and does not address compulsive exercise as a behavioral measure.
Dr. McGilley cited a more promising recent article defining recovery from AN (Dawson, Rhodes, and Touyz, 2015). This study established the following recommendations: Any definition of recovery from AN must include: (1) a BMI of at least 18.5, (2) absence of disordered eating, including restrictive eating, bingeing, purging, and compulsive exercise, (3) some measure of psychological recovery, (4) a way to measure quality of life, and (5) a target that establishes that these gains must be maintained for at least 1 year. While there is no consensus about all these recommendations, Dr. McGilley said, these suggestions can act as working guidelines until further empirical data are available.
Dr. McGilley also described the AED Professionals & Recovery Special Interest Group, a small workgroup focused on creating an empirically derived, cross-cultural consensus definition of recovery as defined by all relevant stakeholders, researchers, clients, and family members. The group has designed a survey that will soon be distributed to major eating disorder organizations around the world. Along with Dr. McGilley, the workgroup includes Drs. Andrea Lamarre, Suzanne Dooley-Hash, Rachel Bachner, Kielty Oberlin, Sander de Vos, and Anna Bardone-Cone.
Adult Women with Eating Disorders: A Frequently Overlooked Group
Margo Maine, PhD, FAED, CEDS, clinical psychologist, author, and co-founder of Maine and Weinstein Specialty Group, LLC, West Hartford, CT, turned to an area that is often neglected, the case of adult women with eating disorders.
Dr. Maine, who is also a senior editor at Eating Disorders: The Journal of Treatment and Prevention, told the audience there is good and bad news about adult women with eating disorders. She added, “The bad news is that eating disorders are now more prevalent than breast cancer in adult women in the U.S.: while the prevalence of breast cancer is 12%, a 2012 study showed that 13.3% of women over 50 had eating disorders. In the United Kingdom, this percentage is 15.3%.” In addition, up to 25% of admissions to inpatient care centers are for women older than 40 years of age.
Some women suffer the effects of an eating disorder all their lives. Dr. Maine added that “The pressure to be perfect and to have a perfect body has no expiration date and no boundaries.” Women are told to “dream big but be smaller, with a high cost” she said. Some suffer all their lives, she added. The cost of pursuing physical perfection reaches to other areas, too, according to Dr. Maine. She pointed to results of studies showing that 15% of girls will stay away from school on “bad body image days,” and that up to 8% of young women will stay away from work on bad body image days.
As for more bad news, Dr. Maine noted that women are half of the of the world’s population, and two-thirds of the workforce, but still hold only 10% of the world’s income and 1% of the world’s property. Dr. Maine added that women gain power through their bodies because they don’t get it in other ways.
As for good news, Dr. Maine noted that just before the iaedp symposium began, the Nevada legislature finally passed the Equal Rights Amendment (ERA). The original ERA was first brought to a vote in 1972, but failed because only 35 states ratified it, just three states short of the threshold necessary to see it adopted into law nationwide.
A New Religiosity about Food and Exercise
Sondra Kronberg, MS, RDN, CEDRD, founder and Executive Director of Eating Disorder Treatment
Collaborative (FEED) and PEACE (Professional Eating and Coaching Events) programs in New York, told audience members that that she is witnessing a real transformation in the types of eating disorders she is seeing in her office. Now eating disorders are no longer only about body size, she said, but rather involve a whole new type of social context around food and exercise. These social contexts involve a whole new “religiosity” that is having an impact on eating disorders. Clients are now asking how healthy eating habits can be bad for you, she said, and ironically an unhealthy degree of “eating clean “or exercising can actually interfere with their quality of life, she said.
Kronberg, who is also a founder of the National Eating Disorders Association (NEDA), is a frequent spokesperson for the organization on media such as CBS, NBC, and Good Morning America, said that clinicians and therapists need to be aware of the changing social context around eating disorders. Kronberg said, “We are all in this culture together–as a nutritionist, it is really important to treat eating disorders in this social context where patients feel they are eating clean and exercising vigorously.”
Several social movements are affecting treatment, she noted. One social movement promotes wholeness and purity of food and eating. Another is the concept that if one strives hard enough through diet and exercise, he or she can alter their genetically predisposed body and age, she said. Food, exercise and body righteousness are now about body transformation. Thus, diet and exercise protocols are taking the place of religion or religious rituals, she added.
The message that if you work hard enough at something, you can accomplish it unfortunately feeds into the feeling that ‘I’m not good enough, and if I were I could change.’ A whole litany of problems follows. Kronberg said, “It is my opinion that in the struggles for spirituality we have lost the hope. Now the new religiosity around making sure food and exercise are correct and righteousness that comes with this effort are taking over.”
A Need for More Rigorous Research
Phillip S. Mehler, MD, Chief Medical Officer, Eating Recovery Center, founder and Executive Medical Director at Denver Health and Glassman Professor of Medicine, University of Colorado School of Medicine, told audience members that there is a glaring need for more rigorous ED studies. Another need involves better education of medical providers.
Dr. Mehler noted that it is sad that so many providers are ignorant of the suffering ED patients undergo. He added, “We really need to be thoughtful about testing and not send our patients to specialists who don’t have the expertise to help them.”
He also outlined his “wish list” for 10 badly needed studies related to medical complications and medial management of eating disorders:
1. Comparative treatment studies about osteoporosis and AN. Dr. Mehler pointed out that the lifetime risk of fractures after treatment for AN is 5 to 10 times higher than in controls. Some believe that 90% of women, even at 85% of ideal body weight, are at risk of bone loss. He urged audience members to keep trying to find optimal treatment for these patients. One suggestion is to ask every patient with restricting-type AN when she had her last DEXA scan.
2. A second need is for a trial of oral vs. enteral vs. parenteral feeding in patients with AN. Such trials may help define the best way to refeed patients with AN, which is an urgent issue, and may lead to more vigorous refeeding protocols.
3. Also important is a study including long-term outcome data of more rapid refeeding protocols in AN. Dr. Mehler added that in Europe, many are still using low-calorie diets in refeeding. Such a study may help define how to start refeeding and how aggressive refeeding should be.
4. A study to determine if osmotic laxatives should be part of all refeeding protocols in AN. Patients struggle with body image, and this might be a way to help them, he said. Although this may seem sacrilegious, this may be a way to help them.
5. A study to answer the question, When does gastroparesis resolve in AN? AN patients experience slow gastric emptying and thus early satiety and find it hard to complete meals. There are organic reasons for this, Dr. Mehler said, and the reason is gastroparesis. There is also a need to understand this at different BMIs, he said.
6. When do vital signs normalize in AN? Insurance companies provide a list of vital signs, but in eating disorders patients, symptoms can last longer. Studies are needed to better define this.
7. How long does the risk of pseudo-Bartter’s edema last?
8. Why do patients with AN die young? They have the highest mortality of all psychiatric patients, he said. Is this due to cardiac problems, such as arrhythmias, or, as Dr. Mehler’s group believe, undiagnosed hypoglycemia? One helpful approach may be to insert a microchip in the chest wall of anorectic patients to record vital information.
9. Do probiotics, and other products such as Gas-X, ®TUMS,® and all other gastrointestinal medications that are requested, really have any value in AN? He noted that with probiotics, for example, AN patients are trying to numb the symptoms and added, “We need evidence-based studies to examine this.”
10. Finally, Dr. Mehler noted that an important final question is the one that has bothered ED professionals for years: How can clinicians deal with patients who have multiple mental disorders, yet are outwardly robustly healthy?
[In the next issue, watch for more highlights from the iaedp Symposium, including Diabetes and Eating Disorders, Binge Eating Disorders, Therapeutic Use of Exercise in EDs, and Girls and Sex: Navigating from Shame to Joy.]