Pro-eating Disorder Website Usage, Health Outcomes in an Eating Disorder Population

Newswise — Web sites that actively promote anorexia and bulimia are used by a significant number of adolescents with eating disorders, according to a forthcoming study from Stanford and Lucile Packard Children's Hospital (LPCH) researchers.

Visitors to these sites are using them to obtain tips on weight loss and how to hide their food avoidance tactics from friends and family members, the researchers say. The study also finds that these teens are spending less time on schoolwork than their peers and more time in the hospital than those who do not use the sites.

“This is the first study that begins to examine the health effects of frequenting these sites, which outnumber those dedicated to recovery by five to one,” said Stanford’s Jenny Wilson. Many of the sites are designed and maintained by teens or young adults with eating disorders.

“These Web sites are founded on the mistaken belief that eating disorders are not a disease, but a way of life,” said LPCH adolescent medicine specialist Rebecka Peebles, MD. “They are well-designed and alluring, often with a gateway emphasizing the danger of the site that can be attractive to teens.”

Peebles, who studies both eating disorders and obesity, and Wilson, a Stanford medical student, co-authored the research, which will be presented in poster format at the annual meeting of the Pediatric Academic Societies in Washington, D.C. on May 16. LPCH adolescent medicine specialist Iris Litt, MD, was the senior advisor for the work. Litt is the Marron and Mary Elizabeth Kendrick Professor in Pediatrics at the Stanford University School of Medicine and former editor-in-chief of the Journal of Adolescent Health.

The research is the culmination of a preliminary study conducted through an anonymous survey of medical histories and internet use sent to the families of adolescents diagnosed with an eating disorder at LPCH since 1997. Patients and parents were asked to fill out separate forms documenting their struggles with the condition. Fifty-two adolescents and 77 parents responded.

Wilson and Peebles found that 40 percent of the adolescents who responded had visited Web sites promoting eating disorders, and 34 percent had visited sites dedicated to recovery from the condition. About one quarter frequented both types of sites, and half the respondents had visited neither. Parents of teens who visited the sites promoting the disorder were more likely to know about the sites and to be concerned about the information their child accessed online than were parents of non-users.

Although adolescents who visited the pro-eating disorder sites reported spending less time on school work and more time in the hospital, they did not differ from those who didn't visit these sites in a number of other health measures: how their weight compared with their ideal body weight, the duration of their eating disorder, the number of missed menses and the presence or absence of osteoporosis.

While the sites provide ‘thinspiration’ in the form of pictures, body weight goal charts, exercises and low-calorie recipes, they don’t uniformly tout the perceived advantages of eating disorders.

“There is a profound ambivalence that embodies the pro-eating disorder sites,” said Peebles. “There are discussions in chat rooms and on bulletin boards about how much the disorder pains sufferers and cautioning others against trying too hard to lose weight.”

The researchers also found that about one quarter of those visiting sites intended to help teens recover from eating disorders actually learned about and tried new weight loss techniques or diet aids as a result of their visit. Of course, they learned similar tactics from sites promoting eating disorders: more than 60 percent of adolescents visiting those sites tried new techniques as a result.

The researchers’ study underscores how dependent teens are on the Internet for health information and peer support. Adolescents typically use the sites promoting eating disorders as a forum to express their innermost thoughts and feelings, say the researchers. Perhaps as a result, teens visiting the pro-eating disorder sites were more likely to describe themselves as recovering from their disorder than were their peers who did not visit the sites.

“It’s such a dichotomy,” said Peebles. “Teens enter the sites promoting eating disorders possibly to gain solidarity and to express their pride in and publicize what they see as a lifestyle choice. At the same time they are cautioning others not to follow in their footsteps. Teens in the midst of an eating disorder need to voice what they want: to continue to lose weight. While many people believe the Web sites should be shut down, it could be a very isolating experience for the users.”

The researchers caution that the results of this study are preliminary. They plan a larger, prospective study designed to more closely follow health outcomes in newly diagnosed eating disorder patients who visit the sites. But in the meantime, they hope their results will serve as a wake-up call for physicians treating adolescents with eating disorders, who may underestimate the influence the Web sites may be having on their patients.

“Medical professionals need to recognize the important role the Internet is playing in the education and mis-education of their patients,” said Litt. “These websites offer peer group support, which can be used for good or for evil.”

About Lucile Packard Children's Hospital
Lucile Packard Children's Hospital at Stanford is a 264-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with Stanford School of Medicine, LPCH offers patients locally, regionally and nationally the full range of health-care programs and services – from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information about LPCH, please visit http://www.lpch.org.

About Stanford University Medical Center
Stanford University Medical Center integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.