Objective: Pro-eating disorder Web sites are communities of individuals who engage in disordered eating and use the Internet to discuss their activities. Pro-recovery sites, which are less numerous, express a recovery-oriented perspective. This pilot study investigated the awareness and usage of pro-eating disorder Web sites among adolescents with eating disorders and their parents and explored associations with health and quality of life.
Patients and methods: This was a cross-sectional study of 698 families of patients (aged 10-22 years) diagnosed with an eating disorder at Stanford between 1997 and 2004. Anonymous surveys were mailed and offered in clinic. Survey content included questions about disease severity, health outcomes, Web site usage, and parental knowledge of eating disorder Web site usage.
Results: Surveys were returned by 182 individuals: 76 patients and 106 parents. Parents frequently (52.8%) were aware of pro-eating disorder sites, but an equal number did not know whether their child visited these sites, and only 27.6% had discussed them with their child. Most (62.5%) parents, however, did not know about pro-recovery sites. Forty-one percent of patients visited pro-recovery sites, 35.5% visited pro-eating disorder sites, 25.0% visited both, and 48.7% visited neither. While visiting pro-eating disorder sites, 96.0% reported learning new weight loss or purging techniques. However, 46.4% of pro-recovery site visitors also learned new techniques. Pro-eating disorder site users did not differ from nonusers in health outcomes but reported spending less time on school or schoolwork and had a longer duration of illness. Users of both pro-eating disorder and pro-recovery sites were hospitalized more than users of neither site.
Conclusions: Pro-eating disorder site usage was prevalent among adolescents with eating disorders, yet parents had little knowledge of this. Although use of these sites was not associated with other health outcomes, usage may have a negative impact on quality of life and result in adolescents' learning about and adopting disordered eating behaviors.