National Survey Shows Dramatic Increase in Awareness of Eating Disorders

Deborah Brauser

October 22, 2010

October 22, 2010 — Results from a national survey conducted by the National Eating Disorders Association (NEDA), a follow-up to focus group information the association collected 6 years ago, show that public awareness of eating disorders (EDs) has increased dramatically.

In fact, 82% of the survey respondents now agree that an ED is a physical or mental illness, 78% said they would know whether someone was suffering from an ED, and 95% said that they would seek help or encourage someone else if they had an ED.

Lynn Grefe

"I think the public is finally starting to get it," Lynn Grefe, president and chief executive officer of NEDA, headquartered in Seattle, Washington, told Medscape Medical News.

"We have moved the thinking, and people are starting to have more empathy and concern and taking it more seriously. They're seeing that these are actually very complicated illnesses," she added.

However, the results also show that the overall level of knowledge has not increased, and the problem of EDs has not declined.

"There is still a lot of work to be done," said Ms. Grefe. "The awareness campaign needs to shift to education about this disease. We really need to get into more depth of information about the illness because we're still losing people.

"At least 25 million people in this country have some type of [ED], and those rates are not going down. And anorexia has the highest death rate of any mental illness," she added.

The survey results were first announced by Ms. Grefe October 10 during her closing presentation at the NEDA annual meeting in New York City.

Survey Highlights

Ms. Grefe reported that ED stigma was more pronounced during the focus groups conducted 6 years ago. "At that time, the participants were uncomfortable even talking about having an [ED] or telling anyone if a family member struggled. I sat there in those focus groups and heard the pain and anguish among people who thought it was a shameful thing."

She noted that she's "absolutely delighted" with the results that now show that 95% of people would talk about this problem. "It's a 'goodbye shame, hello recovery' attitude."

The new survey polled 1000 randomly selected adults across the United States by telephone between August 25 and August 29, 2010.

Overall, the survey found that women were more knowledgeable about EDs than men (82% vs 74%), and that those between the ages of 45 and 54 years were more knowledgeable than any other age group (85%).

Although 57% of the respondents said they knew a great deal or fair amount about bulimia and anorexia nervosa, and 51% knew a great deal or fair amount about binge eating, 56% said they would not change the way they view people with weight problems — even when given information about binge eating disorder.

"The public understands that [EDs] are an illness and should be treated as such," said Ms. Grefe. "But more education is needed about the lesser-known disorders such as binge eating. This education should include sensitivity training about how to view and treat people with weight problems."

Other highlights from the survey include:

  • 59% said that public awareness of EDs has increased over past 5 years;

  • 38% believe EDs are a greater problem than 5 years ago;

  • 39% believe EDs are at the same level as 5 years ago;

  • 59% agreed that EDs are caused by hereditary characteristics;

  • 12% thought that EDs are caused by vanity;

  • 51% said they know no more or not too much more about EDs than they did 5 years ago;

  • 86% favored schools providing information about EDs to students and parents;

  • 85% said that insurance companies should cover treatment for EDs;

  • the Internet is the number 1 source for information about EDs, followed by a medical professional; and

  • 77% knew not too much or nothing at all about family-based therapy or Maudsley treatment.

When asked which types of help the respondent would seek for themselves or encourage a friend with an ED to seek, 42% said from a psychiatrist, psychologist, or care at a general mental health facility, and 47% said from a primary care physician.

"The good news is that people will seek mental health care. The bad news is that many will seek care from their primary care physicians, who may not have the necessary training to treat the person effectively," said Ms. Grefe.

"We need to make sure information is given to the primary care physicians so they can recognize the signs of an ED and what they should do," she added. "I'm not saying they should treat the [ED], but they should know how to recognize it, how to take it seriously, and how to refer that family for help."

More Research Needed

Finally, 80% of the respondents said more research on the causes and most effective treatments would reduce or prevent EDs.

Ms. Grefe agreed and said that a big reason why the numbers of ED sufferers does not decrease is because there has not been enough research done.

"Although 25 million people suffer from some type of [ED] in this country, maybe only $22 million a year is spent on research in this field," she noted. "For schizophrenia, the government spends about $350 million in research a year, and there's maybe 5 million with that disease. I don't mean it to be a contest, but I think this field needs a better seat at the table."

Ms. Grefe said she would also like for clinicians to stop using the words "shameful" and "stigma" when speaking externally. "We need to stop stressing to the public that this is considered an embarrassing illness. I think we are reinforcing this attitude, and it's like a vicious circle, with patients taking their cues from us. It's no more embarrassing then breast cancer or leukemia.

"Instead of talking about stigma, let's spend more time working towards getting them better treatment, towards getting more research, and towards getting insurance coverage for these disorders," Ms. Grefe concluded.

The survey was conducted by American Viewpoint.

2010 NEDA Annual Conference. Presented October 10, 2010.

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