An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community
Abstract Objective To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Study Design Cross‐sectional onli...
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-10-01
|
| Series: | OTO Open |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/oto2.88 |
| _version_ | 1797375328213008384 |
|---|---|
| author | Ruben Ulloa Benjamin Tam Francis Reyes Orozco Carlos X. Castellanos Michael T. Chang Kevin Hur |
| author_facet | Ruben Ulloa Benjamin Tam Francis Reyes Orozco Carlos X. Castellanos Michael T. Chang Kevin Hur |
| author_sort | Ruben Ulloa |
| collection | DOAJ |
| description | Abstract Objective To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Study Design Cross‐sectional online survey. Setting Online. Methods A cross‐sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3 months and analyzed thereafter. Results There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision‐making. Conclusion A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease. |
| first_indexed | 2024-03-08T19:22:38Z |
| format | Article |
| id | doaj.art-9ee924eb22fa40269817a948d4ae4fc1 |
| institution | Directory Open Access Journal |
| issn | 2473-974X |
| language | English |
| last_indexed | 2024-03-08T19:22:38Z |
| publishDate | 2023-10-01 |
| publisher | Wiley |
| record_format | Article |
| series | OTO Open |
| spelling | doaj.art-9ee924eb22fa40269817a948d4ae4fc12023-12-26T15:36:31ZengWileyOTO Open2473-974X2023-10-0174n/an/a10.1002/oto2.88An Exploratory Analysis of the Chronic Rhinosinusitis Online Support CommunityRuben Ulloa0Benjamin Tam1Francis Reyes Orozco2Carlos X. Castellanos3Michael T. Chang4Kevin Hur5Caruso Department of Otolaryngology–Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USACaruso Department of Otolaryngology–Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USACaruso Department of Otolaryngology–Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USACaruso Department of Otolaryngology–Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USADepartment of Otolaryngology–Head and Neck Surgery Stanford School of Medicine Stanford California USACaruso Department of Otolaryngology–Head and Neck Surgery Keck School of Medicine of the University of Southern California Los Angeles California USAAbstract Objective To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Study Design Cross‐sectional online survey. Setting Online. Methods A cross‐sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3 months and analyzed thereafter. Results There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision‐making. Conclusion A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease.https://doi.org/10.1002/oto2.88chronic rhinosinusitisonline support communitysupport group |
| spellingShingle | Ruben Ulloa Benjamin Tam Francis Reyes Orozco Carlos X. Castellanos Michael T. Chang Kevin Hur An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community OTO Open chronic rhinosinusitis online support community support group |
| title | An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community |
| title_full | An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community |
| title_fullStr | An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community |
| title_full_unstemmed | An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community |
| title_short | An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community |
| title_sort | exploratory analysis of the chronic rhinosinusitis online support community |
| topic | chronic rhinosinusitis online support community support group |
| url | https://doi.org/10.1002/oto2.88 |
| work_keys_str_mv | AT rubenulloa anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT benjamintam anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT francisreyesorozco anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT carlosxcastellanos anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT michaeltchang anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT kevinhur anexploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT rubenulloa exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT benjamintam exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT francisreyesorozco exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT carlosxcastellanos exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT michaeltchang exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity AT kevinhur exploratoryanalysisofthechronicrhinosinusitisonlinesupportcommunity |