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Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group

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Abstract

Objective

Peer support is important for psychosocial well-being in patients with rheumatoid arthritis (RA). Our objective was to assess the interactions, engagement, and perceptions of participants in an online support group for patients with RA.

Methods

Participants were 18 years or older, diagnosed with RA within 10 years, and residing in the USA or Canada. All participated in a closed Facebook online support group. Membership was by invitation only, and discussions were visible only to members, moderators, and two research staff. Each week, participants discussed a topic posted by a moderator. They also shared other disease-relevant information beside the topics posted. We assessed participants’ engagement and qualitatively analyzed the content of their postings in the first 5 weeks of participation.

Results

The group had 90 participants: 94% were female and 83% white. Median age was 54 (24–84) years. Mean number of contributors per week was 50 (range, 42–62); 10% of participants never contributed to the discussions. Participation in discussions declined over time. Over three-quarters of participant posting were about information sharing. Participants shared information on disease experiences, medications, social lives (including pictures of themselves, families, and pets), online resources on RA, frustrations, messages of encouragement, and satirical depictions of their disease experience. Many expressed gratitude for the social support provided.

Conclusion

Participants were generally enthusiastic and shared disease-related information and personal experiences. Social media groups may provide alternative means of providing education and peer support often lacking in traditional models of care.

Key Points

• The study examines how patients with rheumatoid arthritis engage in an online support group and the nature of their interactions.

• This study reveals that social media platforms could provide viable options or complements to the traditional face-to-face small group patient support system.

• It may be necessary to pay special attention to how to ensure a sustained participant interest in online social support group among patients with rheumatoid arthritis.

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Acknowledgments

We are thankful to Dr. Kaleb Michaud and Rebecca Schumacher for their assistance recruiting patients through the National Databank for Rheumatic Diseases and to Ms. Eliuth H. Lopez-Olivo who developed the design, graphics, and logos for the Facebook group website. Finally, we would like to express our unconditional gratitude to all the participants in the study who shared their experiences and beliefs to help us better understand their journey through life with RA.

Financial information

This work was supported by a grant from the Rheumatology Research Foundation (Effects of Social Networking on Chronic Disease Management in Arthritis, Principal Investigator: M. Suarez-Almazor). Support was also provided, in part, by the Assessment, Intervention, and Measurement (AIM) Shared Resource through a Cancer Center Support Grant (CA16672, PI: P. Pisters, MD Anderson Cancer Center), from the National Cancer Institute, National Institutes of Health, and through the Duncan Family Institute for Cancer Prevention and Risk Assessment.

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Authors and Affiliations

  1. Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Boulevard, Unit 437, Houston, TX, 77030, USA

    Jude K. A. des Bordes, Jessica Foreman, Maria A. Lopez-Olivo & Maria E. Suarez-Almazor

  2. International Foundation for Autoimmune and Autoinflammatory Arthritis, St. Louis, MO, USA

    Tiffany Westrich-Robertson

  3. Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA

    Susan K. Peterson

  4. Patient Advocate, Toronto, Canada

    Catherine Hofstetter

  5. Patient Partners in Arthritis, Toronto, Ontario, Canada

    Anne Lyddiatt

  6. School of Biomedical Informatics, University of Texas Health Science Center, Houston, TX, USA

    Irmgard Willcockson

  7. Healthy Motivation and the Global Alliance for Musculoskeletal Health of the Bone and Joint Decade, Santa Barbara, CA, USA

    Amye Leong

Authors
  1. Jude K. A. des Bordes
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  2. Jessica Foreman
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  3. Tiffany Westrich-Robertson
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  4. Maria A. Lopez-Olivo
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  5. Susan K. Peterson
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  6. Catherine Hofstetter
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  7. Anne Lyddiatt
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  8. Irmgard Willcockson
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  9. Amye Leong
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  10. Maria E. Suarez-Almazor
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Corresponding author

Correspondence to Maria E. Suarez-Almazor.

Ethics declarations

All participants provided informed consent electronically. The study was approved by the Institutional Review Board of The University of Texas MD Anderson Cancer Center (Houston, TX).

Conflict of interest

The authors declare they have no conflicts of interest.

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Previous publications

Part of this paper was published as conference abstracts in a supplemental issue of the American College of Rheumatology Journal. The complete citations are as follows: des Bordes JKA, Foreman J, Peterson SK, Lopez-Olivo MA, Westrich-Robertson T, Hofstetter C, Lyddiatt A, Leong AL, Suarez-Almazor M. Experiences and perceptions of patients with rheumatoid arthritis participating in an online support group: the use of social media (abstract). Arthritis Rheumatol. 2017; 69 (suppl 10). https://acrabstracts.org/abstract/experiences-and-perceptions-of-patients-with-rheumatoid-arthritis-participating-in-an-online-support-group-the-use-of-social-media/ and des Bordes J, Foreman J, Lopez-Olivo M, Peterson S, Westrich-Robertson T, Hofstetter C, Lyddiatt A, Leong A, Suárez-Almazor M. Physical challenges in RA: a qualitative study of an online patient support group (abstract). Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/physical-challenges-in-ra-a-qualitative-study-of-an-online-patient-support-group/.

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des Bordes, J.K.A., Foreman, J., Westrich-Robertson, T. et al. Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group. Clin Rheumatol 39, 1775–1782 (2020). https://doi.org/10.1007/s10067-020-04967-y

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  • DOI: https://doi.org/10.1007/s10067-020-04967-y

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