Accepted for/Published in: JMIR Formative Research
Date Submitted: Aug 2, 2022
Date Accepted: Apr 20, 2023
Rare Disease Patients and the Power of Online Support Groups: Implications for the Medical Community
ABSTRACT
Background:
Previous studies have shown positive health impacts of using online support communities for informational support, daily living support and emotional support. The specifics of how these communities can be improved have not been studied in detail.
Objective:
This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. This study will also investigate benefits and disadvantages of the online platforms and how they can be improved.
Methods:
This study used quantitative and qualitative analyses. We undertook an online questionnaire survey and semi-structured qualitative interviews via Zoom. Questionnaire results were analyzed using descriptive analysis. Thematic coding with constant comparison was used for interview transcript analysis.
Results:
A total of 436 respondents completed some or all of the survey. The majority of participants are female (93.46%) and 24% of them are in the range of 25-34 years old. Around 81% of the participants have some type of college degree and 55% of them have graduate degrees. 49.39% of them are not currently employed. Most patients stated that their healthcare providers didn’t give accurate and complete information to patients regarding their health situation (mean 2.87, SD 1.34). Also, patients perceived their providers are not knowledgeable regarding online communities that discuss patients’ conditions (mean 1.93, SD 1.15). Patients are confident in using healthcare resources available in online health communities (mean 3.78, SD 1.13). We interviewed 30 participants. The demographic of interviewees was aligned with the survey participants. Nine different themes were identified based on the Qualtrics survey and qualitative interviews. Participants shared the pros and cons of different online support groups that they were using and gave suggestions for improvement. They requested a centralized database with different categories of resources classified based on different diseases. They also emphasized the importance of search features and the ability to find relevant information with a hashtag. Furthermore, they elaborated on privacy and security concerns they have regarding online support group platforms.
Conclusions:
Innovative rare disease patients are finding information not available from their healthcare providers on community support groups. The medical community and web developers have a great opportunity to help these people by engaging with their online communities.
Citation
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