Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD

Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. This study explored how people with a rare disease–Alpha-1 Antitrypsin Deficiency (AATD)–evaluated the NIH's website on AATD and how participants’ evaluation, genetic determinism, and spirituality predicted their intentions to share the website with others. Method: Participants (N = 153) living with AATD made comments about the NIH's website on the disease, and completed a survey about their perceptions of the information, individual characteristics, and intentions to share the NIH website. Results: Qualitative analyses highlighted that participants wanted to access to more complete, high quality, and interesting information on AATD on a more user-friendly website. Quantitative analyses showed that participants were more likely to share the website if they judged the information as higher quality and more interesting, with a range of such responses appearing in relation to the same website, making it evident that the meaning of quality and interest varies. Participants with severe deficiency perceived the information as lower quality and less interesting than participants with mild deficiency. Participants with stronger genetic determinism beliefs and spirituality were more likely to share the NIH's website. Conclusions: We discuss how federal agencies can craft messages that assist people with rare diseases in learning more about their conditions and dealing with the burden of sharing high quality information with providers and the public.