PMID- 32990358
OWN - NLM
STAT- MEDLINE
DCOM- 20210719
LR  - 20220802
IS  - 1531-4995 (Electronic)
IS  - 0023-852X (Print)
IS  - 0023-852X (Linking)
VI  - 131
IP  - 8
DP  - 2021 Aug
TI  - Utilization and Influence of Online Support Communities in Idiopathic Subglottic 
      Stenosis Patients.
PG  - 1821-1827
LID - 10.1002/lary.29110 [doi]
AB  - 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) iSGS(1000) 
      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.
CI  - (c) 2020 American Laryngological, Rhinological and Otological Society Inc, "The 
      Triological Society" and American Laryngological Association (ALA).
FAU - Verma, Sunil P
AU  - Verma SP
AD  - Department of Otolaryngology-Head and Neck Surgery, University of California, 
      Irvine, California, U.S.A.
FAU - Goshtasbi, Khodayar
AU  - Goshtasbi K
AUID- ORCID: 0000-0002-0045-2547
AD  - Department of Otolaryngology-Head and Neck Surgery, University of California, 
      Irvine, California, U.S.A.
FAU - Berry, Lynne D
AU  - Berry LD
AD  - Department of Quantitative Science, Vanderbilt University Medical Center, 
      Nashville, Tennessee, U.S.A.
FAU - Anderson, Catherine
AU  - Anderson C
FAU - Francis, David O
AU  - Francis DO
AD  - Division of Otolaryngology, Department of Surgery, University of Wisconsin, 
      Madison, Wisconsin, U.S.A.
FAU - Gelbard, Alexander
AU  - Gelbard A
AUID- ORCID: 0000-0003-0078-1305
AD  - Department of Otolaryngology-Head and Neck Surgery, Vanderbilt University, 
      Nashville, Tennessee, U.S.A.
LA  - eng
GR  - R01 HL146401/HL/NHLBI NIH HHS/United States
PT  - Journal Article
PT  - Research Support, N.I.H., Extramural
PT  - Research Support, Non-U.S. Gov't
DEP - 20200929
PL  - United States
TA  - Laryngoscope
JT  - The Laryngoscope
JID - 8607378
SB  - IM
MH  - Adult
MH  - Constriction, Pathologic
MH  - Decision Making
MH  - Female
MH  - Humans
MH  - Laryngostenosis/pathology/*psychology
MH  - Male
MH  - Middle Aged
MH  - Patient Participation/*psychology
MH  - *Social Support
MH  - Surveys and Questionnaires
MH  - Tongue/*pathology
MH  - Tongue Diseases/pathology/*psychology
PMC - PMC8005507
MID - NIHMS1674569
OTO - NOTNLM
OT  - Facebook
OT  - Online support group
OT  - idiopathic subglottic stenosis
OT  - internet
OT  - medical decision-making
OT  - online support communities
OT  - patient empowerment
EDAT- 2020/09/30 06:00
MHDA- 2021/07/20 06:00
PMCR- 2022/08/01
CRDT- 2020/09/29 09:23
PHST- 2020/08/26 00:00 [revised]
PHST- 2020/05/21 00:00 [received]
PHST- 2020/08/29 00:00 [accepted]
PHST- 2020/09/30 06:00 [pubmed]
PHST- 2021/07/20 06:00 [medline]
PHST- 2020/09/29 09:23 [entrez]
PHST- 2022/08/01 00:00 [pmc-release]
AID - 10.1002/lary.29110 [doi]
PST - ppublish
SO  - Laryngoscope. 2021 Aug;131(8):1821-1827. doi: 10.1002/lary.29110. Epub 2020 Sep 
      29.