The Internet as a source of data to support the development of a quality-of-life measure for eating disorders

Despite the attractiveness of the Internet as a data source on individuals' experiences with health conditions, few have studied its use in quality-of-life instrument development. In this article, the authors describe the use of Internet-based unsolicited first-person narratives to supplement qualitative material derived from other sources (published articles and interviews) in the early stages of development of a quality-of-life instrument for eating disorders. In a systematic Internet search, they identified 31 posted first-person narratives. Sixteen (52%) authors had anorexia nervosa, 11 (35%) had bulimia nervosa, and 4 (13%) had either eating disorders not otherwise specified or both diagnoses. Themes arising from the narratives were very similar to those from other sources; however, some specific sensitive topics uniquely expressed in the narratives produced items that the authors later validated in focus groups. Despite some limitations, the Internet was an efficient, inexpensive, and fruitful source of supplementary information for item generation.