Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

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Abstract

Background

Despite reported benefits, many women do not attend breast cancer support groups. Abundant online resources for support exist, but information regarding the effectiveness of participation is lacking. We report the results of a Twitter breast cancer support community participant survey.

Objective

The aim was to determine the effectiveness of social media as a tool for breast cancer patient education and decreasing anxiety.

Methods

The Breast Cancer Social Media Twitter support community (#BCSM) began in July 2011. Institutional review board approval with a waiver of informed consent was obtained for a deidentified survey that was posted for 2 weeks on Twitter and on the #BCSM blog and Facebook page.

Results

There were 206 respondents to the survey. In all, 92.7% (191/206) were female. Respondents reported increased knowledge about breast cancer in the following domains: overall knowledge (80.9%, 153/189), survivorship (85.7%, 162/189), metastatic breast cancer (79.4%, 150/189), cancer types and biology (70.9%, 134/189), clinical trials and research (66.1%, 125/189), treatment options (55.6%, 105/189), breast imaging (56.6%, 107/189), genetic testing and risk assessment (53.9%, 102/189), and radiotherapy (43.4%, 82/189). Participation led 31.2% (59/189) to seek a second opinion or bring additional information to the attention of their treatment team and 71.9% (136/189) reported plans to increase their outreach and advocacy efforts as a result of participation. Levels of reported anxiety before and after participation were analyzed: 29 of 43 (67%) patients who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation ( P<.001). Also, no patients initially reporting low or no anxiety before participation reported an increase to high or extreme anxiety after participation.

Conclusions

This study demonstrates that breast cancer patients’ perceived knowledge increases and their anxiety decreases by participation in a Twitter social media support group.

Related collections

Most cited references 30

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Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups

Cornelia F. van Uden-Kraan, Constance Drossaert, Erik Taal … (2008)

Background Patients who visit online support groups benefit in various ways. Results of our earlier study indicated that participation in online support groups had a profound effect on the participants’ feelings of “being empowered.” However, most studies of online patient support groups have focused on the members of these groups who actively contribute by sending postings (posters). Thus far, little is known about the impact for “lurkers” (ie, those who do not actively participate by sending postings). Objective In the present study, we explored if lurkers in online patient support groups profit to the same extent as posters do. Methods We searched the Internet with the search engine Google to identify all Dutch online support groups for patients with breast cancer, fibromyalgia, and arthritis. Invitations to complete an online survey were sent out by the owners of 19 groups. In the online questionnaire, we asked questions about demographic and health characteristics, use of and satisfaction with the online support group, empowering processes, and empowering outcomes. The online questionnaire was completed by 528 individuals, of which 109 (21%) identified themselves as lurkers. Results Lurkers (mean age 47 years) were slightly older than active participants (mean age 43 years, P = .002), had a shorter disease history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P = .004). No significant differences were found in other demographic variables. Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine (all P < .001), and because other members expected them to be there (P = .003). Lurkers and posters did not differ in their information-related reasons for visiting the online support group. Lurkers were significantly less satisfied with the online support group compared to posters (P < .001). With regard to empowering processes such as “exchanging information” and “finding recognition,” lurkers scored significantly lower than posters. However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as “being better informed,” “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “enhanced self-esteem,” and “increased optimism and control.” The exception was “enhanced social well-being,” which scored significantly lower for lurkers compared to posters (P < .001). Conclusion Our study revealed that participation in an online support group had the same profound effect on lurkers’ self-reported feelings of being empowered in several areas as it had on posters. Apparently, reading in itself is sufficient to profit from participation in an online patient support group.

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Differences in information seeking among breast, prostate, and colorectal cancer patients: results from a population-based survey.

Katrina Armstrong, Joe W. Gray, Anca Romantan … (2010)

There is much research describing cancer patients' information needs and their use of the Internet, print media, and other sources to fulfill these needs. Yet little is known about whether patients with different types of cancer vary in their information needs and seeking behaviors. This study used population-based data to address this question. A sample was randomly drawn from the list of patients with breast, prostate, or colorectal cancer reported to the Pennsylvania Cancer Registry in 2005. Patients completed a mail survey (N=2010); respective response rates were 68%, 64%, and 61%. Colorectal cancer patients reported consistently less information seeking than breast and prostate cancer patients. Multivariate analyses revealed that differences by cancer type were not explained by sex or other demographics, disease stage, or treatment received. These differences were most pronounced among patients with early stage cancer. Cancer patients have myriad information needs and use a range of sources to satisfy these needs, but there appear to be important differences in information engagement by cancer type. Understanding differences in information seeking among disease-specific populations may help guide future patient education and decision making across the care continuum. Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.

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Cancer talk on twitter: community structure and information sources in breast and prostate cancer social networks.

Itai Himelboim, Jeong Yeob Han (2014)

This study suggests taking a social networks theoretical approach to predict and explain patterns of information exchange among Twitter prostate and breast cancer communities. The authors collected profiles and following relationship data about users who posted messages about either cancer over 1 composite week. Using social network analysis, the authors identified the main clusters of interconnected users and their most followed hubs (i.e., information sources sought). Findings suggest that users who populated the persistent-across-time core cancer communities created dense clusters, an indication of taking advantage of the technology to form relationships with one another in ways that traditional one-to-many communication technologies cannot support. The major information sources sought were very specific to the community health interest and were grassroots oriented (e.g., a blog about prostate cancer treatments). Accounts associated with health organizations and news media, despite their focus on health, did not play a role in these core health communities. Methodological and practical implications for researchers and health campaigners are discussed.

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Author and article information

Contributors

Deanna J Attai:

UCLA Health Burbank Breast Care191 S. Buena Vista StreetSuite 415Burbank, CA, 91505United States1 818 333 25551 818 333 2559dattai@mednet.ucla.edu

ORCID: http://orcid.org/0000-0002-1893-1183

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications Inc. (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: July 2015

Publication date (Electronic): 30 July 2015

Volume: 17

Issue: 7

Electronic Location Identifier: e188

Affiliations

[1] ¹UCLA Health Burbank Breast Care Burbank, CAUnited States

[2] ²Allegheny Health Network Pittsburgh, PAUnited States

[3] ³Gundersen Health System Department of Medical Research La Crosse, WIUnited States

[4] ⁴Women With Cancer The Woodlands, TXUnited States

[5] ⁵Akari Healthcare Charlestown, MAUnited States

[6] ⁶Gundersen Health System Norma J. Vinger Center for Breast Care La Crosse, WIUnited States

Author notes

Corresponding Author: Deanna J Attai dattai@ 123456mednet.ucla.edu

Author information

Deanna J Attai http://orcid.org/0000-0002-1893-1183

Michael S Cowher http://orcid.org/0000-0002-6377-1131

Mohammed Al-Hamadani http://orcid.org/0000-0003-3966-4675

Jody M Schoger http://orcid.org/0000-0002-8686-9756

Alicia C Staley http://orcid.org/0000-0002-5321-3179

Jeffrey Landercasper http://orcid.org/0000-0002-4000-4546

Article

Publisher ID: v17i7e188

DOI: 10.2196/jmir.4721

PMC ID: 4705354

PubMed ID: 26228234

SO-VID: 3babc8f0-0ded-481f-b857-4971457b5c89

Copyright © ©Deanna J Attai, Michael S Cowher, Mohammed Al-Hamadani, Jody M Schoger, Alicia C Staley, Jeffrey Landercasper. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 30.07.2015.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 19 May 2015

Date revision requested : 16 June 2015

Date revision received : 22 June 2015

Date accepted : 8 July 2015

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