Evaluation of the Internet for Finding Persons With Undiagnosed Rheumatoid Arthritis and Systemic Lupus Erythematosus

Abstract

The internet is used by many new rheumatology patients before visiting a health care provider, and is also used for health education, for recruiting study participants, administering surveys, conducting clinical trials, data entry and management of multicenter trials, and providing a forum for patients to share experiences in chat rooms. The internet has not been used for nor evaluated for public health applications. We evaluated the internet for early detection and referral of individuals with "typical" early symptoms of undiagnosed rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). The websites and selected links identified by search terms of typical symptoms were evaluated for health information quality, readability, and whether or not the sites prioritized possibilities and suggested actions. None of the websites examined were completely suitable for finding undiagnosed persons with early RA or SLE. Although the websites had accurate information, their reading levels were too high for the average reader, and were generally poor in terms of giving a differential diagnosis, prioritizing the possibilities and none provided an algorithm for action. Internet sites could be enhanced for early detection and referral. The internet has become an important factor in clinical practice and physicians are increasingly explaining or responding to the information that their patients find on the internet. Our study shows that the information available to individuals with undiagnosed RA and SLE is likely to be of little help to them and could delay their seeking appropriate attention.