Utilization and Influence of Online Support Communities in Idiopathic Subglottic Stenosis Patients

Laryngoscope. 2021 Aug;131(8):1821-1827. doi: 10.1002/lary.29110. Epub 2020 Sep 29.


Objectives: To determine the factors that shape utilization of social media-based online support communities (OSCs) and study the influence of these communities on medical decision-making in patients with Idiopathic Subglottic Stenosis (iSGS).

Study design: Survey study.

Methods: A survey investigating OSC use was sent to the 1,056 members of the North American Airway Collaborative (NoAAC) iSGS1000 cohort in January 2018. Responses were merged with the existing NoAAC data set containing extensive demographic data, disease-specific history, and responses to validated patient-reported outcome measures.

Results: A total of 755 individuals with iSGS and mean age of 51.8 ± 11.6 years were included (99% female, 98% white, 63% college educated) and 58% were OSC users. Younger age, female gender, and college education were each associated with OSC use (P < .05). Users spent 2.5 ± 3.3 hours per week on the platforms. Time spent on OSC was not associated with total number of prior treatments. Higher disease anxiety (FoP-Q, R = 0.26, P < .001), lower social support (MOS, R = -0.12, P = .037), and lower level of shared-decision-making with the treating physician (SDM-Q9, R = -0.16, P = .007) were weakly associated with more hours spent engaging an OSC. OSC use influenced treatment and physician choice in 35% and 26% of users, respectively. Increased time spent on OSC use was associated with increased influence on patient medical decisions regarding treatment, surgery, and physician choice (P < .05).

Conclusion: OSC engagement is common in patients with iSGS. Disease anxiety, social support, and relationship with the physician may influence OSC utilization. More OSC engagement weakly associated with greater OSC influence on patient medical decision-making.

Level of evidence: NA. Laryngoscope, 131:1821-1827, 2021.

Keywords: Facebook; Online support group; idiopathic subglottic stenosis; internet; medical decision-making; online support communities; patient empowerment.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Constriction, Pathologic
  • Decision Making
  • Female
  • Humans
  • Laryngostenosis / pathology
  • Laryngostenosis / psychology*
  • Male
  • Middle Aged
  • Patient Participation / psychology*
  • Social Support*
  • Surveys and Questionnaires
  • Tongue / pathology*
  • Tongue Diseases / pathology
  • Tongue Diseases / psychology*