Rare Disease Information Websites Vary in Quality, Study Finds

Patients with rare diseases often turn to the Internet for information on their illness, but an analysis of some of these websites found that their content often failed to meet important quality criteria and neglected key information categories.

The study, published in the Journal of Medical Internet Research, evaluated the quality of 693 German websites containing information about rare diseases. These sites were also grouped by publisher type to assess the relative quality levels of sites produced by individual patients, medical institutions, support groups/patient organizations, and other associations and sponsoring bodies.

First, the researchers checked if the identified websites used quality certificates. Just 28 (4%) of the 693 websites were certified by the international Health on the Net Foundation Code of Conduct (HONcode), while 7 and 8 websites were certified by the German Action Forum Health Information System or Medisuch, respectively.

The study authors then evaluated the quality of the website information using questionnaire responses or their own assessments, and found that results varied widely by measure. For instance, 92.8% of the sites demonstrated consideration of the target group, while just 33% adequately cited their sources and 30.4% declared conflicts of interest. The sites’ accessibility also differed by criterion; 99.9% of the pages allowed readers to adjust the font size, but none presented the information in simple language as defined by the Netzwerk Leichte Sprache (Network of Simple Language).

The quality of information provided by individual patients or their relatives was significantly lower than information from support groups/patient organizations, medical institutions, and other associations or sponsoring bodies. Interestingly, the quality of information did not significantly differ between the medical institutions and the patient support group sites.

In fact, the study highlighted these support groups and patient organizations as important resources for sharing knowledge, experiences, and advice. The substantial quantity of these sites “shows that these persons feel isolated with the disease and that they want to make information about themselves public to get in touch with other people affected by the disorder,” the authors wrote.

They found that relatively few of the sites included information about family planning (13.4%), social-legal advice (12.4%), or psychosocial counseling (7.1%), even though these topics are important to rare disease patients, who often worry about the genetic ramifications of their disorders or feel isolated in their communities. These 3 topics were more frequently included on websites published by support groups and patient organizations, but their presence was hardly universal at 54.8%, 62.8%, and 67.4%, respectively.

The authors identified several opportunities for improvement by these websites, such as receiving quality certifications, fulfilling more quality criteria, and including information on the underrepresented social categories. However, these sites still have considerable value, as they present a unique opportunity for patients and their families to connect and for researchers to share their discoveries.

“Especially for ultrarare diseases, for which limited information is available and only a few people worldwide are affected, an international and intercontinental research context is indispensable,” the authors wrote.