Taking a Global Approach to Eating Disorders

The International Conference on Eating Disorders, held in Barcelona, Spain June 7-10, underscored the contrast between the vast advances being made in eating disorders research and treatment and the worldwide challenges of underfunding for treatment, high costs for care, and misconceptions about the seriousness of eating disorders among the general public.

A Worldwide Effort to Increase Awareness

In her keynote address, “Reducing the Burden of Suffering in Eating Disorders: Toward a Global Perspective,” Dr. Ruth Striegel-Moore, professor of psychology at Wesleyan University, Middletown, CT, challenged eating disorders experts to come together as a world community to improve awareness and treatment of eating disorders. She praised the progress being made, including an explosion of research, growth in the number of scientific journals, and the rise in the number of professional advocacy groups. Dr. Striegel-Moore also saluted the men and women who developed the Worldwide Charter for Action on Eating Disorders [for a copy of the Charter, see: http://www.edauk.com/acrobat/charter.pdf], which outlines the rights and expectations for people with eating disorders and their families.

Eating disorders are the source of serious personal suffering and pose major burdens to society, she said, adding that scientific advances show that harnessing technology can improve treatment. Despite the advances, however, she noted that eating disorders remain under-researched and undertreated. “Eating disorders intensely and profoundly affect families not only due to the risks passed on through genetics but also because of financial burdens on the family. They pose enormous burdens for society, and a severe threat to health and well-being,” she said.

Limitations and Narrow Diagnostic Criteria

According to Dr. Striegel-Moore, eating disorders are often under-diagnosed worldwide because most studies include only adults and only European and U.S. groups. In addition, narrow diagnostic criteria lead to underestimates of the number of eating disorders in the community. As a result of the inability to provide an accurate number of people affected, government officials feel eating disorders are not an important health risk. For example, she pointed out that at first the Healthy People 2010 initiative omitted eating disorders, which could seriously affect funding for research and treatment. At this point, the only goal related to eating disorders in the initiative is reducing recurrence. There is no mention of prevention of eating disorders.

On the positive side, she said, there is hope with projects such as the international database being developed by Dr. Jim Mitchell of the Neuropsychiatric Institute, Fargo, ND. To further reduce the burden, Dr. Striegel-Moore urged the audience to agree upon a common core assessment category and validated diagnostic instruments, as well as focusing on shortening the duration of eating disorders. “Prevention does work to reduce risk,” she said, adding, “We need to be very tuned in to early response to treatment and to use treatments that work.” “If it doesn’t work, reconsider,” she stressed.

Broader outreach and screening methods will also help, she said, including use of pro-recovery websites, which can help in case-finding and coordinating screening across the world. She also called for a “reality check,” to recognize the disconnect between the evidence base and what actually happens in clinical care. Even in countries with low barriers to care, people with eating disorders underutilize services available to them, she said.

Fighting Stigma

Dr. Striegel-Moore noted that stigma is one of the greatest burdens to getting treatment for an eating disorder. Eating disorders are often trivialized or even ridiculed, she said, and some laypeople view disorders such as anorexia nervosa (AN) as a “slimming disease” that one can easily change. Others believe that AN is self-induced or just a way to get attention. Still others think eating disorders are caused by lack of self-discipline or inadequate parenting, discounting the importance of genetics or biological variables.

The stigma of having an eating disorder also reduces self-esteem and worsens suffering for patients, delays seeking help, and reduces needed support from families and friends, and therapeutic effectiveness, she added. To combat the stigma of an eating disorder, she noted that it is important to understand it in light of the cultural objectification of the female ideal.

Finally, Dr. Striegel-Moore challenged the audience members to help reduce the burden of eating disorders by getting involved with eating disorders organizations, advocating with elective officials, and donating time and money to improve awareness of eating disorders.

Plenary Session I: When Nature Meets Nurture

Three experts outlined ways in which genetics and environment may interact to influence behaviors and the risk of eating disorders in differing age groups.

Gene-environmental interactions

Avshalom Caspi, PhD, professor of personality development at King’s College, London, and a pioneering genetics researcher, described some of the challenges and strategies for using information gained from gene environment interaction (GxE). Such interactions occur when the outcome of exposure to an environmental pathogen is conditional upon a person’s genotype. This very new area of science has already been used to explore schizophrenia, responses to cannabis and other types of substance abuse, and has been applied in many experimental animal studies. One day it might help why some individuals develop eating disorders while others do not, he said.

According to Dr. Caspi, better understanding of genetic susceptibility to environmental factors will be helpful for understanding why some individuals react to environmental stressors and why their genetic makeup makes them susceptible. He praised the science of imaging genomics, which combines brain imagining and human genome identification.

Dr. Caspi also proposed a novel study design that would use environmental pathogens as research tools in gene-hunting. Dr. Caspi noted that one day, as research continues, “We may be able to understand how an environmental factor external to an individual is able to access the neurobiological system and alter its elements to cause psychopathology.”

Puberty and genetic activation of eating disorders

Dr. Kelly Klump, associate professor of psychology at Michigan State University, and President-elect of the Academy of Eating Disorders, told the audience that puberty is a critical period for the activation of genes that make some persons susceptible to developing an eating disorder. She also explained how recent studies have shown that ovarian hormones may have important links to the development of eating disorders. Better understanding of the ways developmental changes in genetic influences might highlight neurobiological systems involved in the development of eating disorders.

Dr. Klump described two studies using the data from the Minnesota Twin study, which included 1200 female twins and their parents, which have examined genetic and environmental factors involved in the etiology of eating disorders. “Adolescence may be a critical time for the emergence of genetic influences on eating disorders,” she said.

The first study involved two groups, 11-year-old and 17-year-old twins. At age 11, genetic influences accounted for 0% of the variability of eating disorder symptoms, while environmental influences made up 100% of variability of eating disorder symptoms. Among the 17-year-olds, however, genetic influences made up 60% of the variability of eating disorder symptoms and 40% of the environmental influences.

In a second study of 11-, 14-, and 17-year old twins, similar patterns emerged: at age 11, genetics accounted for 0% of variability of eating disorder symptoms, but by age 14, the correlation of symptoms to genetics was very similar among the 14-year-olds and the 17-year-olds. According to Dr. Klump, a dramatic change in risk of eating disorder symptoms was seen in mid-adolescence—which was a sign of an activation of a genetic effect on eating disorder symptoms. “It was as if the genes began to turn on,” she said, and the common event in both groups was puberty. Before puberty, genetic effects accounted for no eating disorder symptoms, but by puberty this rose to 50%. Further evaluation pointed to the effect of ovarian hormones on this activation (see also article on page 5). In animal studies, Dr. Klump noted, ovarian hormones have a direct effect on ingestion of food.

Dr. Klump stressed that as exciting as the findings of the genetic and environmental clues are, the developmental shifts and the effects of ovarian hormones are only a single part of the very complex puzzle of the etiology of eating disorders.

Maternal eating disorders and the postnatal period

Dr. Alan Stein, professor of child and adolescent psychiatry at the University of Oxford, noted that maternal eating disorders have a powerful impact upon developing children, even from the first week of life. A mother’s behaviors, emotions, and cognitions can affect the child, who can distinguish the mother’s voice as early as one week of age.

The postnatal period may be particularly difficult for women with eating disorders because of overconcern about body shape and weight, he said. Adverse experiences during this time can affect a child’s later development, Dr. Stein explained. In studies of bulimic mothers and control subjects, mothers with eating disorders were found to be more intrusive, more critical and the cause of more mother-infant conflicts than were controls.

Dr. Stein described an intervention technique in which videotaping feeding sessions helped to demonstrate maternal problems with feeding and interacting with infants. One of the clues that suggested maternal-infant conflict was the mother’s inability to correctly interpret her infant’s feeding cues. A second finding was the mother’s struggle or refusal to allow her infant age-appropriate autonomy over food and self-feeding. At five years, the conflict between child and mother remained. Dr. Stein added that mothers with eating disorders had subtle difficulties with interacting with their children. By 10 years, the children had more concerns about their shape and weight than did children of mothers who did not have eating disorders.

What can clinicians do? Treating the parent’s eating disorder alone is not enough and does not reduce the risk to the child, said Dr. Stein. To intervene earlier, parents need to become aware of their negative patterns. Dr. Stein recommends a positive approach to changing such patterns, first with in-home visits to evaluate the situation. Often simple education about what the infant is doing is enough. One area is failure to pick up on the infant’s cues—this can be a problem as simple as a mother feeding the infant ahead of her own meal, being hungry and unconsciously transferring her own feelings of hunger upon the infant. Another is interpreting an infant’s slow eating and swallowing as refusal to eat.

With video feedback, the mother can often see negative or potentially harmful patterns she would never have otherwise suspected. The focus begins with the child, not the parent, highlighting what the baby is doing. Then, attention can gently turn to the mother’s responses to the baby and, according to Dr. Stein, subsequent sessions can then address conflicts, self-feeding issues, and work with cognitions, using guided self-help CDs.