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PEDIATRICS Vol. 114 No. 1 July 2004, pp. 100-103

Cystic Fibrosis on the Internet: A Survey of Site Adherence to AMA Guidelines

Mark A. Anselmo, MD, Katherine M. Lash, BA, Elisabeth S. Stieb, RN and Kenan E. Haver, MD

Joey O’Donnell Cystic Fibrosis Center, MassGeneral Hospital for Children, Harvard Medical School, Boston, Massachusetts

Objectives. The Internet permits unprecedented and mostly unrestricted access to medical knowledge; however, concerns exist regarding viewer privacy, accountability of authorship, accuracy of information, and patient safety. To address these issues, the American Medical Association (AMA) has developed guidelines concerning web site content and visitor rights. Cystic fibrosis (CF) is the most common genetically inherited lethal disease in North America. Many Internet sites that provide information on CF have been developed, although adherence to validated guidelines for online health information is not required. The purpose of this study was to assess systematically web sites with content pertaining to CF for adherence to the published AMA guidelines.

Methods. The search term "cystic fibrosis" was entered into a commonly used search engine (Google), and the first 100 eligible sites were reviewed. Each site was examined for adherence to the AMA Guidelines for Medical and Health Information Sites on the Internet using a series of adapted questions. There were 15 questions divided into the following main categories: 1) site structure and viewer privacy, 2) author accountability, 3) scientific citation, and 4) patient safety. The number of positives for each question was tabulated.

Results. With respect to site structure, fewer than half (45%) of the reviewed sites indicated a date of last revision. Only 11 (11%) carried an explicit privacy policy. A responsible author or group was listed in only 43 (43%) of 100 sites. Presented data regarding CF was supported by references, sources, or expert review in only 38 (38%) of 100 sites. A medical disclaimer noting that information provided does not substitute for evaluation by a health care team was evident in only 37 (37%) sites.

Conclusions. The majority of easily accessible CF informational web sites do not adhere to guidelines published by the AMA. Patients and families who use the Internet as a CF information resource should examine the web sites carefully and be familiar with the guidelines established by the AMA. Personal information is not protected, and few sites provide explicit privacy guarantees. Finally, CF care teams should inquire about Internet use by patients and families and be prepared to discuss findings from the Internet to heighten patient safety and awareness.

Key Words: Internet • guidelines • adherence • cystic fibrosis

Abbreviations: AMA, American Medical Association • CF, cystic fibrosis • CAM, complementary and alternative medicine

Received for publication May 29, 2003; Accepted Jan 14, 2004.