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

ABSTRACT

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.

KEYWORDS:

• information sharing
• rare diseases
• health websites
• genetic determinism
• spirituality
• patient engagement

Ethical approval

This study was approved by the Institutional Review Boards of Pennsylvania State University at University Park and the Medical University of South Carolina (MUSC).

Disclosure statement

No potential conflict of interest was reported by the authors.

Acknowledgement

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We are grateful to the members of the Alpha-1 Research Registry for sharing their thoughts and experience with us. We thank two anonymous reviewers for their constructive comments.

Notes on contributors

Xun Zhu is a doctoral candidate in the Department of Communication Arts & Sciences at The Pennsylvania State University. His research focuses on the antecedents to and consequences of word-of-mouth conversations on health outcomes, as well as the structure of social networks in which these conversations take place.

Rachel Smith is a Professor in the Department of Communication Arts & Sciences and Department of Human Development and Family Studies, The Pennsylvania State University, Pennsylvania, USA. She is an investigator in the Center for Infectious Disease Dynamics and Methodology Center at Penn State. She is a quantitative, communication scientist who researches how people react to messages about threats to wellbeing. Her theoretical approach emphasizes the socially situated and embodied nature of communication and wellbeing.

Roxanne L. Parrott is a Distinguished Professor Emeritus of Communication Arts and Sciences and Health Policy and Administration at the Pennsylvania State University. Her research focuses on the design of health messages to promote behavioral adaptation in situations where individuals are unable, unwilling, and/or unlikely to avoid situations and practices that put their health at risk.

Amber K. Worthington is a post doctoral teaching fellow in the Department of Communication Arts and Sciences at the Pennsylvania State University. Her research focuses on health information diffusion, conversations about health, and health campaign design to promote both persuasion and information sharing across the lifespan.

ORCID

Rachel A. Smith http://orcid.org/0000-0003-2407-7515

Notes

1 We replicated the analyses on H1 and H2 with the sample of the participants who completed quantitative measures on website evaluation and sharing intention (N = 365), regardless of whether they provided comments on the open-ended question. The results were consistent with those reported in the manuscript. After controlling for sex, phenotypes, age, and genetic knowledge, participants’ sharing intention was positively associated with information quality (β = .15, t = 2.44, P < .05), information interestingness (β = .21, t = 3.45, P < .01), genetic determinism (β = .14, t = 2.68, P < .01), and spirituality (β = .10, t = 2.08, P < .05).

Additional information

Funding

This project was supported by the National Human Genome Research Institute (US) under Award number R21HG007111.