ILD

Internet a let down in IPF


People with idiopathic pulmonary fibrosis who look to the Internet for information on their disease may be putting themselves at considerable risk, researchers say.

The Canadian researchers found online information on the lung disease was often inaccurate, incomplete and outdated.

Nearly half of IPF-related websites included in the study suggested a role for at least one medication with no proven benefit, and more than a third of websites recommended medications that were harmful in IPF.

Foundation and advocacy websites were more likely to recommend non-indicated therapies for treatment.

Whereas media reports were less likely to provide an overview of IPF, instead focusing on a single item such as newly-approved treatment.

The top two websites for both content and quality scores were Wikipedia and Medscape.

“The medical community, including IPF specialists, needs to take a more active role in ensuring patients have access to accurate and up-to-date online medical information,” the researchers concluded in the study that was published in the American Journal of Respiratory and Critical Care Medicine.

“Patients with IPF should be aware that the information they are accessing may be inaccurate and that harmful recommendations may be made, even on websites from reputable organizations,” they added.

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