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The role of online support communities: benefits of expanded social networks to patients with psoriasis.

Abstract

OBJECTIVE

To determine the demographics, usage patterns, attitudes, and experiences of online support site users.

DESIGN

Online survey. Patients A total of 260 subjects recruited from 5 online psoriasis support groups.

MAIN OUTCOME MEASURES

An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented.

RESULTS

The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity.

CONCLUSIONS

Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities.

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  • Publisher Full Text
  • Authors+Show Affiliations

    ,

    Center for Connected Health, Boston, MA, USA.

    ,

    Source

    Archives of dermatology 145:1 2009 Jan pg 46-51

    MeSH

    Adolescent
    Adult
    Aged
    Data Collection
    Female
    Humans
    Internet
    Male
    Middle Aged
    Psoriasis
    Quality of Life
    Self-Help Groups
    Social Support
    Young Adult

    Pub Type(s)

    Journal Article
    Research Support, Non-U.S. Gov't

    Language

    eng

    PubMed ID

    19153342

    Citation

    Idriss, Shereene Z., et al. "The Role of Online Support Communities: Benefits of Expanded Social Networks to Patients With Psoriasis." Archives of Dermatology, vol. 145, no. 1, 2009, pp. 46-51.
    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.
    Idriss, S. Z., Kvedar, J. C., & Watson, A. J. (2009). The role of online support communities: benefits of expanded social networks to patients with psoriasis. Archives of Dermatology, 145(1), pp. 46-51. doi:10.1001/archdermatol.2008.529.
    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. PubMed PMID: 19153342.
    * Article titles in AMA citation format should be in sentence-case
    TY - JOUR T1 - The role of online support communities: benefits of expanded social networks to patients with psoriasis. AU - Idriss,Shereene Z, AU - Kvedar,Joseph C, AU - Watson,Alice J, PY - 2009/1/21/entrez PY - 2009/1/21/pubmed PY - 2009/2/12/medline SP - 46 EP - 51 JF - Archives of dermatology JO - Arch Dermatol VL - 145 IS - 1 N2 - OBJECTIVE: To determine the demographics, usage patterns, attitudes, and experiences of online support site users. DESIGN: Online survey. Patients A total of 260 subjects recruited from 5 online psoriasis support groups. MAIN OUTCOME MEASURES: An exploratory analysis was performed to determine demographic and disease characteristics of online support site users. Perceived benefits were also documented. RESULTS: The mean (SD) age of respondents was 40.1 (11.5) years (range, 18-75 years), most (75.7%) were white, female (60.4%), and college educated (84.3%). Key factors associated with use of online support sites included availability of resources (95.3%), convenience (94.0%), access to good advice (91.0%), and the lack of embarrassment when dealing with personal issues (90.8%). The most common activities were posting messages (65.0%) and searching for information (63.1%). Nearly half of all respondents perceived improvements in their quality of life (49.5%) and psoriasis severity (41.0%) since joining the site. Intensity of participation in online support activities was associated with improved quality of life (P = .002), but not with improvements in psoriasis severity. CONCLUSIONS: Our data demonstrate that psoriasis virtual communities offer users both a valuable educational resource and a source of psychological and social support. Such benefits could be further enhanced by physician engagement within these communities. SN - 1538-3652 UR - https://www.unboundmedicine.com/medline/citation/19153342/full_citation L2 - https://jamanetwork.com/journals/jamadermatology/fullarticle/10.1001/archdermatol.2008.529 DB - PRIME DP - Unbound Medicine ER -