Coming Out of the Shadows
On completion of this article, readers should be able to:
- List early signs of eating disorders (ED's) and explain why not all patients with ED's will have experienced recent weight loss.
- Explain why a “wait and see” approach is inappropriate for patients with a suspected ED.
- Recognize that the family is not to blame for an ED and instead is the best resource for successful treatment.
As many as 13 percent of adolescents live in the shadow of an eating disorder, almost 3 percent of whom have a severe ED.1 The incidence in younger children appears to be on the rise—3 percent of those hospitalized with an ED from 2008 to 2009 were under the age of 12.2
Among the principal EDs are anorexia nervosa (AN), characterized by a restrictive diet and low body weight; bulimia nervosa (BN), in which bouts of binging are followed by compensatory behaviors such as purging; binge eating disorder, in which bouts of binging elicit guilt but are not followed by compensatory behaviors; and Other Specified Feeding or Eating Disorder (OSFED), which can have traits of either AN or BN but do not meet full diagnostic criteria.
Not a lifestyle choice or an adolescent phase, EDs are serious psychiatric disorders. Indeed, AN has the highest death rate for any psychiatric disorder—almost six times that of the general population.3 Patients with BN or OSFED die at almost twice the rate of those without EDs.3
Evidence-based therapy is available to treat early-stage EDs; however, if diagnosis is delayed, EDs can become chronic and much more resistant to treatment. Primary care providers have a seminal role to play in helping those with EDs come out of the shadows and receive the treatment and support they need.
Early Detection & Assessment
The five-item SCOFF questionnaire is an effective ED screening tool that is easy to implement in primary care. Questions include: Do you make yourself Sick because you feel uncomfortably full? Do you worry that you have lost Control over how much you eat? Have you recently lost more than One stone (14 lb) in a 3-month period? Do you believe yourself to be fat when others say you are too thin? Would you say that Food dominates your life? Patients who answer “yes” to two or more questions should undergo a comprehensive assessment—ideally performed by an ED specialist—comprising a physical examination, a detailed family and patient history, and laboratory tests.
The examination should include measurement of height and weight and both standing and resting heart rate and blood pressure as well as a thorough review of systems. History should cover past problems with EDs, recent weight loss or gain, attitudes toward weight, eating habits, psychiatric disorders such as anxiety or depression that are often comorbid with EDs, any compensatory behaviors (e.g., vomiting, diet pills, or even, in patients with type 1 diabetes, insulin abuse), and any problems with reproductive health (e.g., amenorrhea can be indicative of AN).
Complete blood cell counts, urinalysis, and a comprehensive electrolyte panel that includes magnesium, phosphorus, and vitamin D levels as well as hepatic and thyroid function testing should be conducted. Depending on the severity of illness, additional laboratory studies are sometimes indicated. Because malnutrition or electrolyte imbalances caused by EDs can lead to life-threatening cardiac complications, an EKG is recommended in patients who present with bradycardia, cardiac symptoms, or a history of binging/purging.
Would You Recognize These Cases of ED?
Three fictional ED cases follow. If Monica, Maria, or Frank walked into your clinic, would you recognize that each had an ED? Would you know the best treatment for each?
Monica, a 12-year-old white female, presents to a pediatrician for her regular wellness visit. She has no history of weight loss; however, despite an increase in height, her weight has plateaued. Her heart rate is 55 bpm. Her mother says that her daughter has been avoiding junk food and counting her calories. Although she once loved team sports, she now prefers solitary exercise such as jogging.
Although AN is typically associated with substantial weight loss, failure to meet an age-appropriate growth target can be a telltale early sign in children and adolescents. In this patient, that failure, especially when considered in the light of her growing social isolation and interest in counting calories, should arouse concern for AN.
After a positive SCOFF screen, Monica is referred for comprehensive evaluation, which reveals signs of starvation, including anemia and thrombocytopenia, as well as a history of anxiety. A “wait and see” approach is not appropriate in children and adolescents with AN and other EDs, because complications can be life-threatening and early-stage disease is the most amenable to treatment.
Monica is referred to an ED clinic for family-based therapy (FBT), an evidence-based treatment for AN. A large 2010 clinical trial in adolescent patients (ages 12-18 years) with AN showed FBT, in which the parents take a central role in refeeding the child with guidance from ED specialists, to be more effective than individual therapy for achieving weight gain and full remission at 6 and 12 months.4 Unlike hospitalized patients, who run the risk of relapse when they are released and return to their normal lives, patients receiving FBT, who remain at home and learn to adapt their eating habits in a real-world environment, are less likely to relapse.
The central tenet of FBT is that the family is the best asset for recovery. This is in stark contrast to the prevailing wisdom about EDs a few decades ago, when EDs were attributed to overprotective, controlling, or “enmeshed” families. Relinquishing such outdated notions will be necessary if patients are to fully benefit from the promise of FBT.
Patients with AN often do not recognize the severe health consequences of their obsessive dieting and so are resistant to treatment, frustrating family, and care providers who do not know how to reach them. The answer to changing such obsessional mindsets is surprisingly simple. “A lot of it is weight restoration,” says Renee Rienecke, Ph.D.,
director of the Friedman Center for Eating Disorders eating-disorders at MUSC, which specializes in FBT. “How do you get back over the line? Restoration of physical health goes a long way.”
As refeeding progresses and weight is restored under family surveillance, the patient’s obsessional thoughts begin to resolve. The Minnesota Starvation Experiment, undertaken to determine the best way to renourish the many soldiers returning from World War II who had faced starvation, found that the obsessional patterns of thought that manifested in underfed study participants usually resolved when they were provided high-calorie nutrition.5
Maria, a 14-year-old Hispanic female, presents with severe muscle cramps, constipation, and dizziness. At 5 foot 8 inches and 165 pounds, she has a body mass index of 25.1 and is in the 90th percentile for girls her age, which is considered overweight. Anxious about her weight, Maria insists that she eats lots of healthy fruits and vegetables and takes care to avoid “bad” high-fat foods. She confirms her mother’s report that her habit of exercising late at night is interfering with her sleeping.
The stomach cramps and dizziness, especially in the context of Maria’s anxiety about weight and her unusual sleep patterns, are suggestive of an electrolyte imbalance due to BN and mandate a comprehensive electrolyte panel and other blood tests. Many patients with BN purge or engage in other “compensatory” behaviors late at night when their behavior will not be noticed by their families. On further examination, no evidence of the parotid swelling, tooth enamel loss, or knuckle scarring that can be a consequence of frequent vomiting is noted. Not all patients who purge by vomiting, however, present with these symptoms.
Maria’s unusual sleeping patterns could suggest the need to void numerous times during the night due to laxative abuse. Upon further questioning, Maria acknowledges that she has been using laxatives regularly for the past two months. Because purging needs to occur weekly for at least three months for a diagnosis of BN, Maria is diagnosed as having an OSFED. Although OSFEDs do not meet the full criteria for AN or BN, they affect more people and can be just as deadly.
This suspicion of ED-associated laxative abuse is confirmed by results on the electrolyte panel, which show abnormally low sodium, potassium, and magnesium levels. Increased chloride and decreased bicarbonate levels are also indicative of laxative abuse; in contrast, purging by vomiting leads to decreased chloride and increased bicarbonate levels.6
Maria is referred to an ED specialist for cognitive behavioral therapy, in which an effort is made to change behavior by disrupting negative thought patterns. Other evidence-based therapies for BN or an OSFED with BN characteristics include dialectical behavior therapy and FBT, which has shown some efficacy in adolescents with BN.7
Maria’s diagnosis should not be missed due to the stereotype that only affluent white women develop EDs. Indeed, BN has been found to be most prevalent among Hispanic adolescents.8
Frank, a 20-year-old white male who recently dropped out of college after a break-up with his long-time boyfriend, presents with fatigue, dizziness, and depression. At 5 foot 10 inches and 120 pounds, he has a BMI of 17.2, which indicates he is underweight. He has lost 40 pounds since leaving college three months ago. On examination, he has a heart rate of 39 bpm and a blood pressure of 95/52 mm Hg.
Frank’s loss of 25 percent or more of his weight in the course of three months and his very low heart rate (Less than 40 bpm) and blood pressure 6 together with psychological factors such as his depression and recent break-up should alert the physician that this is an emergent situation and that Frank should be hospitalized immediately. Laboratory tests reveal hypophosphatemia and anemia, confirming the need for hospitalization.
Cardiovascular complications are among the deadliest of AN’s consequences. Bradycardia is classically associated with AN, perhaps as a natural compensatory reaction to starvation, but long-term AN has also been implicated in a host of other cardiovascular abnormalities, including mitral valve prolapse, loss of left ventricular mass, myocardial remodeling, and pericardial effusions.
Once Frank has been medically stabilized, he can receive outpatient therapy at either a day treatment center or at home, with his mother or another adult he chooses taking charge of refeeding as part of FBT. Although the large clinical trial showing the efficacy of FBT for AN was conducted with teens, recent studies have shown benefit for those in their early twenties as well. In one recent study, sixty percent of young adults with AN who received FBT were no longer underweight a year later.9 However, adherence rates in this age group were not as good as those reported in teens.4
Telltale signs of AN should not be ignored because Frank is male. Although EDs are more common in females, five to 20 percent of those with EDs are male, of which 14 to 42 percent are gay or bisexual men.10 The emotional stress of “coming out” and harassment from peers can lead to high levels of stress in homosexual teens that can increase the risk of developing an ED.
1 Smink FRE, et al. Curr Psychiatry Rep 2012;14:406–414.
2 Zhao Y, Encinosa W. An update on hospitalizations for eating disorders, 1999 to 2009: statistical brief #120. Health care Cost and Utilization Project (HCUP) Statistical Briefs [Internet]. Rockville (MD): Agency for Health care Research and Quality (US).
3 Arcelus J, et al. Arch Gen Psychiatry 2011;68(7):724-731.
4Lock J, et al. Archives of General Psychiatry. 2010; 67:1025–1032.
5 Tucker, T. The great starvation experiment: Ancel Keys and the men who starved for science. 2007 Minneapolis, MN: University of Minnesota Press.
6 Bermudez O, et al. AED Report 2016, 3rdEdition. Academy for Eating Disorders, Deerfield, IL.
7 Le Grange D, et al. Arch Gen Psychiatry 2007;64:1049–1056.
8 Swanson SA, et al. Arch Gen Psychiatry. 2011 Jul;68(7):714-723.
9 Chen E, et al. Int J Eat Disord 2016 Jul 1;49(7):701-707.
10 Feldman MB, et al. Int J Eat Disord. 2007 Apr; 40(3):218–226.