The Role of an Online Community for People With a Rare Disease
Author Information
Author(s): Judith N Lasker, Ellen D Sogolow, Rebecca R Sharim, Shelia Cotten
Primary Institution: Lehigh University
Hypothesis
Why do people with primary biliary cirrhosis turn to an Internet-based support group?
Conclusion
Messages exchanged on this mailing list emphasize biomedical information and provide a valuable opportunity for support among those with primary biliary cirrhosis.
Supporting Evidence
- 74.6% of posts contained biomedical topics.
- 40.6% of posts included peer support.
- 95.6% of participants were women.
- Participants ranged in age from 28 to 78 years.
- Messages reflected a predominance of requests for biomedical information.
Takeaway
People with a rare liver disease use the Internet to share information and support each other, mostly focusing on medical topics.
Methodology
Content analysis of messages posted to a listserv over two months.
Potential Biases
Potential bias due to the self-selected nature of participants who are more educated and engaged.
Limitations
Demographic data on posters was incomplete, and the study only included those who posted messages.
Participant Demographics
95.6% women, ages 28 to 78, mean age 54.8.
Statistical Information
P-Value
P<0.001
Statistical Significance
p<0.001
Digital Object Identifier (DOI)
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