How reliable is online diffusion of medical information targeting patients and families?

To determine whether online diffusion of the "Ten Warning Signs of Primary Immunodeficiency Diseases (PID)'' adheres to accepted scientific standards.

We analyzed how reproducible is online diffusion of a unique instrument, the "Ten Warning Signs of PID", created by the Jeffrey Modell Foundation (JMF), by Google-assisted searches among highly visited sites from professional, academic and scientific organizations; governmental agencies; and patient support/advocacy organizations. We examined the diffusion, consistency of use and adequate referencing of this instrument. Where applicable, variant versions of the instrument were examined for changes in factual content that would have practical impact on physicians or on patients and their families.

Among the first 100 sites identified by Google search, 85 faithfully reproduced the JMF model, and correctly referenced to its source. By contrast, the other 15 also referenced the JMF source but presented one or more changes in content relative to their purported model and therefore represent uncontrolled variants, of unknown origin. Discrepancies identified in the latter included changes in factual content of the original JMF list (C), as well as removal (R) and introduction (I) of novel signs (Table 2), all made without reference to any scientific publications that might account for the drastic changes in factual content. Factual changes include changes in the number of infectious episodes considered necessary to raise suspicion of PID, as well as the inclusion of various medical conditions not mentioned in the original. Together, these changes will affect the way physicians use the instrument to consult or to inform patients, and the way patients and families think about the need for specialist consultation in view of a possible PID diagnosis.

The retrieved adaptations and variants, which significantly depart from the original instrument, raise concerns about standards for scientific information provided online to physicians, patients and families.