Background: •Despite the reported benefits, approximately 60% of women do not attend breast cancer support groups. •Many online resources for support exist, but information regarding the effects of participation is lacking. •We report the results of a Twitter breast cancer support community participant survey. Methods: •The Breast Cancer Social Media (#BCSM) Twitter community began in July 2011. •IRB approval with waiver of informed consent was obtained for a de-identified survey •The survey was posted for 2 weeks on Twitter and on the #BCSM website blog and Facebook page. Results: Characteristics of the Respondents: • 206 respondents, with a median age of 45-54 • 93% of the respondents were women • 74% from the United States • 92% Caucasian • 83% completed a 4-year college degree • 69% had been treated for breast cancer • 14% reported living with metastatic breast cancer • 72% became aware of #BCSM through Twitter • 45% had been participating in the chats for >12 months. Breast Cancer Knowledge: • 81% increased overall knowledge • 86% survivorship • 80% metastatic breast cancer • 70% cancer types and biology • 66% clinical trials and research • 56% treatment options • 56% breast imaging • 54% genetic testing and risk assessment • 43% radiotherapy Conclusions: •While many online breast cancer patient resources exist, data documenting patient educational benefits of participation are lacking. • This study demonstrates that breast cancer patients’ perceived knowledge can be increased and that their anxiety can be decreased by Deanna J. Attai MD 1 , Jeffrey Landercasper MD 2 , Jody M. Schoger 3 , Alicia C. Staley 4 , Michael S. Cowher MD 5 1 David Geffen School of Medicine at University of California Los Angeles, Burbank, CA 2 Norma J Vinger Center for Breastcare, Gundersen Health System, La Crosse, WI 3 Women With Cancer, The Woodlands, TX 4 Akari Healthcare, Charlestown, MA 5 Cleveland Clinic, Cleveland, OH Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education? Results: Anxiety: • 29 of 43 patients (67%) who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation (p<0.001) •No patients initially reporting “low or no” anxiety prior to participation reported an increase to “high or extreme anxiety” after participation. Additional Findings: •31% reported that participation led them to seek a second opinion or bring additional information to the attention of their treatment team •73% percent reported plans to increase their outreach and advocacy efforts as a result of participation.

Twitter Social Media is an Effective Tool for Breast Cancer Survivor Support and Education

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Page 1: Twitter Social Media is an Effective Tool for Breast Cancer Survivor Support and Education

Background:•Despite the reported benefits, approximately 60% of women do not attend breast cancer support groups.

•Many online resources for support exist, but information regarding the effects of participation is lacking.

•We report the results of a Twitter breast cancer support community participant survey.

Methods:•The Breast Cancer Social Media (#BCSM) Twitter community began in July 2011.

•IRB approval with waiver of informed consent was obtained for a de-identified survey

•The survey was posted for 2 weeks on Twitter and on the #BCSM website blog and Facebook page.

Results:Characteristics of the Respondents:

• 206 respondents, with a median age of 45-54• 93% of the respondents were women• 74% from the United States• 92% Caucasian• 83% completed a 4-year college degree• 69% had been treated for breast cancer• 14% reported living with metastatic breast cancer• 72% became aware of #BCSM through Twitter• 45% had been participating in the chats for >12

months.

Breast Cancer Knowledge:• 81% increased overall knowledge • 86% survivorship• 80% metastatic breast cancer• 70% cancer types and biology• 66% clinical trials and research• 56% treatment options• 56% breast imaging• 54% genetic testing and risk assessment• 43% radiotherapy Conclusions:

•While many online breast cancer patient resources exist, data documenting patient educational benefits of participation are lacking.

• This study demonstrates that breast cancer patients’ perceived knowledge can be increased and that their anxiety can be decreased by participation in a Twitter social media support group.

Deanna J. Attai MD1, Jeffrey Landercasper MD2, Jody M. Schoger3, Alicia C. Staley4, Michael S. Cowher MD5

1David Geffen School of Medicine at University of California Los Angeles, Burbank, CA 2Norma J Vinger Center for Breastcare, Gundersen Health System, La Crosse, WI 3Women With Cancer, The Woodlands, TX 4Akari Healthcare, Charlestown, MA 5Cleveland Clinic, Cleveland, OH

Can Twitter Social Media be an Effective Tool for Breast Cancer Survivor Support and Education?

Results:Anxiety:• 29 of 43 patients (67%) who initially reported “high or extreme” anxiety reported “low or no” anxiety after participation (p<0.001)

•No patients initially reporting “low or no” anxiety prior to participation reported an increase to “high or extreme anxiety” after participation.

Additional Findings:•31% reported that participation led them to seek a second opinion or bring additional information to the attention of their treatment team

•73% percent reported plans to increase their outreach and advocacy efforts as a result of participation.