Evaluating Sentiment, Engagement, and Perception of Biologics Among Patients with Psoriasis and Psoriatic Arthritis on Reddit

March 2023 | Volume 22 | Issue 3 | 306 | Copyright © March 2023


Published online February 23, 2023

Nicole Maynard BSa, Danielle Yee MDa, Camila Carranza BSa, Manan Mehta BSa, Rasika Reddy BAb, Caterina Zagona-Prizio BSc, Sabrina Khan BSa, Samiya Khan BSd, April W. Armstrong MD MPHa

aUniversity of Southern California Keck School of Medicine, Los Angeles, CA
bUniversity of Texas Southwestern School of Medicine, Dallas, TX
cUniversity of Colorado School of Medicine, Aurora, CO
dLong School of Medicine, San Antonio, TX

for potential patients to refer to the platform for insight into experiences with biologic treatment. We found that a majority of patients felt positive about the efficacy of biologics as an anti-psoriatic medication, with the most frequent theme being that biologics work well for the management of psoriasis signs and symptoms. Other users reported that they were hoping to get on a biologic and/or hopeful that they would improve symptoms. Some responses praised the speed at which they saw their skin and joint pain improve. Positive sentiment can be attributed in part to efficacy but also convenience, ease of dosing, and manageable side effects.

Some users had discussed biologics with their dermatologist and were looking for more advice or anecdotal experiences with the medication. If patients express hesitation when counseled on biologics, their dermatologists may find that referring them to other patient anecdotes may help them feel more comfortable with starting these medications. Additionally, the volume of users seeking anecdotal advice or experiences may indicate that general counseling might not be sufficient for some patients.

While the mean sentiment score was overall positive, there were still a notable number of posts expressing dissatisfaction with biologics. This included claims that they did not work, stopped working, or simply masked the problem. Some users expressed dissatisfaction with having to switch biologics multiple times, although others tried to instill hope by ensuring that there are multiple options available should one need them. Some posts expressed frustration with delayed time to efficacy, and others complained of stubborn areas, such as the scalp or palms and soles. Because residual psoriasis while on a biologic is not uncommon, patient expectations should be managed appropriately so they understand that complete clearance might not be immediately achievable. Providers can reassure them, however, that a trial of multiple biologics, or adding a topical medication, may help target any stubborn areas.9

Previous research has shown that online support groups for psoriasis patients can improve patient empowerment and provide valuable support and advice.10 By accessing these forums, patients can share advice, provide hope, and connect with others who are experiencing similar struggles. As such, patients should not be discouraged from seeking health information on Reddit in particular. However, while subreddit forums for psoriasis and psoriatic arthritis can provide ample benefits, they also carry risks. For instance, they are not moderated nor fact-checked, and as a result, users may interact with misinformation or opinions stated as fact.11

A limitation of this study is that the population of Reddit users may not be representative of the greater psoriasis and psoriatic arthritis patient population. Additionally, the accuracy of the information conveyed on these platforms may be variable. 

For physicians, it is important to recognize the benefits of social media for patients while also educating them on the potential downsides. This study aims to better understand the content of discussions on Reddit so that providers can anticipate common concerns regarding biologics and their efficacy. Physicians should understand what information individuals are seeking on these forums, but they should also caution that some of the provided information may be based on the individual experience and does not necessarily apply to all patients with psoriatic disease. In addition to more in-depth counseling during patient visits, providers can encourage patients to seek additional information from reputable sources such as the National Psoriasis Foundation. Providers must remain aware of content on these online forums to anticipate common patient concerns and understand how patients use social media for dermatologic advice. 

DISCLOSURES

AWA has served as a research investigator and/or scientific advisor to AbbVie, Almirall, Arcutis, ASLAN, BI, BMS, EPI, Incyte, Leo, UCB, Janssen, Lilly, Nimbus, Novartis, Ortho Dermatologics, Sun, Dermavant, Dermira, Sanofi, Regeneron, Pfizer, and Modmed.

All other authors have no conflict of interest to report.

REFERENCES

  1. Gantenbein L, Navarini AA, Maul LV, et al. Internet and social media use in dermatology patients: Search behavior and impact on patient-physician relationship. Dermatol Ther. 2020;33(6):e14098. doi:10.1111/dth.14098
  2. Reddit. Reddits 2021 Year in Review. Available at: https://www.redditinc.com/ blog/reddit-recap-2021. Accessed Dec, 28 2021.
  3. Aspirus Health. World Psoriasis Day aims to unite people through education [Internet]. Available at: https://www.aspirus.org/press-room/world-psoriasisday- aims-to-unite-people-through-e-4059. Accessed Dec 2, 2021.
  4. Mease PJ, Gladman DD, Papp KA, et al. Prevalence of rheumatologistdiagnosed psoriatic arthritis in patients with psoriasis in European/North American dermatology clinics. J Am Acad Dermatol. 2013 Nov;69(5):729-735. doi: 10.1016/j.jaad.2013.07.023.
  5. Menter A, Gottlieb A, Feldman SR, et al. Guidelines of care for the management of psoriasis and psoriatic arthritis: section 1. Overview of psoriasis and guidelines of care for the treatment of psoriasis with biologics. J Am Acad Dermatol. 2008;58(5):826–50
  6. Kamata M, Tada Y. Efficacy and safety of biologics for psoriasis and psoriatic arthritis and their impact on comorbidities: A literature review. Int J Mol Sci. 2020;21(5):1690. https://doi.org/10.3390/ijms21051690
  7. Moreno MA, Goniu N, Moreno PS, et al. Ethics of social media research: common concerns and practical considerations. Cyberpsychol Behav Soc Netw. 2013;16(9):708-713. doi:10.1089/cyber.2012.0334
  8. Florek AG, Wang CJ, Armstrong AW. Treatment preferences and treatment satisfaction among psoriasis patients: a systematic review. Arch Dermatol Res. 2018;310:271-319. https://doi.org/10.1007/s00403-018-1808-x
  9. Haidari W, Pona A, Feldman SR. management of residual psoriasis in patients on biologic treatment. J Drugs Dermatol. 2020;19(2):188-194. doi:10.36849/ JDD.2020.3989
  10. Idriss SZ, Kvedar JC, Watson AJ. The role of online support communities: Benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009;145(1):46-51. doi:10.1001/archdermatol.2008.529
  11. Vance K, Howe W, Dellavalle RP. Social internet sites as a source of public health information. Dermatol Clin. 2009;27(2):133-136. doi:10.1016/j.det.2008.11.010

AUTHOR CORRESPONDENCE

April W. Armstrong MD MPH armstrongpublication@gmail.com