Conference Explores Better Access to Care for Minority Populations, Part 2

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Rachael Bryant-Waugh, PhD, of the Great Ormond Street Hospital for Children, London, told the audience at a plenary session at the Academy for Eating Disorders annual meeting that a series of barriers cause children with eating disorders to be underserved in clinical settings and in research studies. According to Dr. Bryant-Waugh, the problem begins with the varied and sometimes confusing definitions of the term “child.”

An additional barrier, according to Dr. Bryant-Waugh, is that many children don’t fit neatly into the current Diagnostic and Statistical Manual-IV definitions for anorexia nervosa and eating disorders not otherwise specified (EDNOS). “We have real difficulties placing children into the current diagnostic criteria because children can present differently from adults,” Dr. Bryant-Waugh pointed out.

In addition, children have a wide variety of disordered eating patterns. Among children 7 to 12 years of age, clinicians may see patterns ranging from anorexia for boys and girls, overeating and childhood obesity, eating extremely fatty foods, very restricted eating, and phobias, such as a diarrhea or vomit phobia. Bulimia nervosa is rarely seen in this age group.

Barriers to treatment

The evidence base for treatment of children with eating disorders is tiny or inferred, and there are no treatment manuals designed for treatment of young patients, she said, adding, “The range of current treatment practices is a reflection of our collective lack of scientifically based evidence about what works and what doesn’t work.”

Successful treatment can also be difficult because when children are stressed, it is developmentally normal for them to “dig in their heels and refuse to budge,” she said. Then, evaluating and treating children may prove to be challenging due to communication problems and difficulties in assessment. Assessing children, especially younger children who have to be interviewed, can be very time-consuming, Dr. Bryant-Waugh added. Then there are ethical and funding problems. In addition, clinicians must work with the child and family and the wider system, including schools and primary care staff.

A more consistent approach to diagnosis, terminology, and a better classification system would be a good start, according to Dr. Bryant-Waugh. She also called for clearer guidelines for treating children with eating disorders. While there is a good body of research on normal school-age children and early feeding problems, there are few long-term studies about how early feeding problems relate to anorexia nervosa and bulimia nervosa. One important area is discovering what consequences follow the interruption of normal puberty with starvation, she noted.

Males with Eating Disorders: Many Strikes Against Them

Stereotypes, lack of appropriate diagnostic criteria, bias, and the fact that most treatment programs are designed exclusively for females all work to interfere with treatment of males with eating disorders, according to Dr. Arnold Andersen, Director of the Eating Disorders Program at the University of Iowa School of Medicine, Iowa City, IA.

Few programs specifically designed for men exist, Dr. Andersen said, and many centers and groups bar men from their programs. When men are included, they may be treated like teenage girls, he said. Almost all weight reduction programs are also female-oriented, he pointed out. Instead, men need programs that are athletically oriented and that include other men, Dr. Andersen stressed. To succeed, weight reduction programs need to be convenient and to appreciate men’s needs.

New study shows eating disorders are not rare among men.

Dr. Andersen cited a recent study by the Toronto group (Am J Psychiatry 2001;158:570—see July-August EDR) that established that eating disorders are more common among men than previously thought. The Toronto researchers found that for the full anorexia syndrome, the ratio of females to males was 4:1; for the partial anorexia syndrome, the ratio was 4.0:1.5. As for bulimia nervosa, following the classic DSM-IV definition, the ratio of cases of women to men was 11:4; for the more common partial bulimia nervosa syndromes, the ratio dropped to 1.8:1.0. Dr. Andersen said, “We are doing a lousy job of bringing men, who make up 1 of 3 cases, into treatment.” There is good evidence that the gender ratio of clinic cases is much lower than the population ratio, he added.

Another reason why ED males may be underserved

Socially and culturally, there is a stigma from the illness, Dr. Andersen said. In addition, our culture is putting the same burdens of weight and shape on men as on women, he noted. Men are also underserved because of their personal concerns and their discomfort, lack of knowledge, shame, and fear.

Problems with the DSM-IV

The DSM-IV is an extraordinarily important and worthy document, he said, but it also needs to be revised because it is biased against men with eating disorders. For example, one of the three main criteria for the diagnosis of anorexia nervosa is amenorrhea. Dr. Andersen added that the Toronto Group has shown that amenorrhea is a totally inadequate and archaic criterion for diagnosing anorexia nervosa. In addition, he feels that the weight loss criterion of 15% is inappropriate for men.

Bias from health-care professionals

Not only do social and cultural institutions show bias against males by creating impossible standards, according to Dr. Andersen, but it’s not uncommon for clinicians and insurance companies to insist that men don’t get eating disorders.

According to Dr. Andersen, health-care workers frequently miss the extreme distress in males with eating disorders. Males with eating disorders have high degrees of depression and general psychopathology, but don’t seem to be ill enough or to have many telltale symptoms of an eating disorder. Clinicians may not ask the right questions, specifically those about body image concerns and concerns about weight, he said.

Dr. Andersen challenges the idea that men with eating disorders don’t do well in treatment. “We’ve put firmly to rest the idea that somehow men are sicker and respond less well than women,” he added.

More studies needed

Dr. Andersen was optimistic about the future, and called for more studies of the genetics and comorbidity of eating disorders, the male social learning process, and medical symptoms among men. Awareness of men with eating disorders is improving, he said, and more crossover books, such as The Adonis Complex: The Secret Crisis of Male Body Obsession (Pope, Phillips, and Olivardia) and Making Weight: Healing Men’s Conflicts with Food, Weight and Shape (Andersen, Cohn, Holbrook) are dealing with the topic of men and eating disorders.

He said, “We need to particularly appreciate the genetic substate, individual development and experiences, the family functioning style, and even the way dads relate to boys, for example.

Gay and Lesbian Patients: Unknown Territory for Many Clinicians

James Lock, MD, PhD, of Stanford University School of Medicine, Palo Alto, CA, told the audience that among the underserved populations, clinicians probably know the least about gay and lesbian eating disorders. However, he added, gays and lesbians are affected by all the same types of issues that affect minorities, males, and children, including false assumptions, biases, and lack of information.

Dr. Lock posed three questions to the audience: “What evidence do we have that suggests that gay men and lesbians are at increased risk of developing an eating disorder? Why might gay men and lesbians be vulnerable to eating disorders? What should we do about eating disorders in gay men and lesbians?”

A small but growing literature on sexual orientation and eating disorders.

Dr. Lock reported that there is a small, developing literature examining the role of sexual orientation in the development of eating disorders. Case reports by David Herzog and others have suggested that gays and lesbians are at higher risk of developing an eating disorder. Other studies have failed to document this. Still other studies have suggested that gay males and heteroxexual women with eating disorders share common features, such as binge eatiing and body dissatisfaction.

As for lesbians, study results have varied widely, suggesting that lesbians are at higher risk, lower risk, and the same risk for eating disorders, he said. Overall, Dr. Lock concluded that thus far the data are inconclusive, but some study results suggest that lesbians have increased risk for eating disorders.

High levels of abuse increase risk

Why are gay men and lesbians at risk for eating disorders? Part of the problem lies within the stigma of being gay, Dr. Lock said. In addition, 30% to 40% of gay men and women have high levels of physical, emotional, and verbal abuse in their routine lives, he said. Disordered eating may follow betrayal, lowered self-esteem, and victimization, Dr. Lock said.

Dr. Lock also pointed out that coping styles usually depend upon resources a person can build upon, such as family and a personal sense of worth. He said, “Unlike any other minority group we have discussed today, gay and lesbian persons are most often not accepted in their families, and 20% or so are kicked out of their families as teens.” Thus, they lose a fundamental resource for building esteem and for developing positive coping styles This leaves them vulnerable to all sorts of illnesses, including eating disorders, he added.

Improving awareness of gay patients

Clinicians spend little time learning about homosexuality, Dr. Lock said. For example, as reported in a study in 1992, the average time spent teaching U.S. medical students about homosexuality was 3 hours and 27 seconds, even though homosexuals make up 3% to 5% of the population.

According to Dr. Lock, a good place to start is with pilot studies at a basic level, with case studies and reports. He suggested that clinicians recognize that a percentage of their patients are gay, and not to assume patients’ sexual orientation. Better interviewing techniques will also help. One simple measure is to include materials aimed at gay patients, such as pamphlets from a gay men’s support group or lesbian support group, in the waiting room. This can send a signal, making it easier for gay patients to seek help. Clinicians can develop more sensitivity to gay issues, do more reading, and become better educated about these patients.