Breast cancer survivors
Her2+ breast cancer
People with a genetic mutation linked to cancer risk
Triple negative breast cancer
Women under 45
Women over 45
Special populations: Women newly diagnosed with breast cancer
Newly diagnosed breast cancer patients often use online communication to find more information about their diagnoses and treatment options. But does online communication benefit these patients' decision-making process? (8/30/16)
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Whether online communication, including email, texting, social media such as Twitter and Facebook, and/or web-based support groups helps patients who are newly diagnosed with breast cancer make decisions about their treatment.
Little is known about how newly diagnosed breast cancer patients use online communication in their decision making process.
This study suggests that using online communication can help newly diagnosed breast cancer patients view their treatment decision choices more positively. However, the researchers included many different forms of communication, from texting to web-based support groups, noting that the majority of usage in the study population was for texting and emailing. More work needs to be done to assess other communication methods to see if they positively affect newly diagnosed breast cancer patients.
NCT02866994: Project Connect Online: An Internet-based Intervention for Women With Breast Cancer (PCO). This randomized comparative effectiveness trial examines the potential psychosocial and physical health-related benefits of sharing personal websites with other women with breast cancer, as well as with family and friends (PCO PLUS condition) versus sharing with family and friends only (PCO condition) in a sample of women with metastatic breast cancer.
The Economic Times
Patients can gain lots of information by communicating online with other breast cancer patients about their diagnoses and treatment options. But because little is known about how online communication affects how newly diagnosed breast cancer patients view their treatment decision choices, Lauren Wallner and her colleagues from the University of Michigan, Ann Arbor, and other institutions published a research letter in JAMA Oncology in July 2016 that examined online communication use by these patients during their treatment decision process.
Does online communication change how newly diagnosed breast cancer patients view their treatment decision choice?
The 2,460 women in this study were between the ages of 20-79, and newly diagnosed with breast cancer (stages I-III) between July 2013 and September 2014. The researchers obtained information about these women through the Surveillance, Epidemiology, and End Results (SEER) registries of the state of Georgia and Los Angeles County. About 6 months after their breast cancer diagnosis, the women filled out surveys regarding their treatment experiences.
The survey asked:
The majority (about 59%) of the women were white. Fewer (about 16%) were black, with Latina women (about 14%), and Asian women (about 8%) also included. The average age of women who took the survey was about 62.
The researchers grouped all forms of communication into one category, including texting, Twitter, and web-based support groups into one group. These methods of communication differ from one another—texting may occur with more intimate family members, while Facebook and Twitter may be used for communicating with people whom the women have never met before, but who are experiencing the same issues and feelings. These are all valuable methods of communication; however, it would be helpful to know how each one affects how patients view their decisions.
Additionally, because the researchers did not break up the group of women into different age categories, it is unclear which women benefited the most by their online communication. Nor did the researchers look at how online communication affects women at higher risk for breast cancer due to family history or mutations in cancer risk-increasing genes, or women who had metastatic breast cancer. Women with these diagnoses face a different set of decisions, and might have more difficulty finding someone who has faced similar decisions.
The results of this study suggest that online communication may help newly diagnosed breast cancer patients view their decisions more positively. However, wide variation in the results across age and race indicated that some women may have barriers to access online communication. And while the study did look at patient satisfaction, it did not identify or assess the various treatments the women chose or how well these treatments worked for them. More work needs to be done to further understand how online communication impacts patients.
For those looking for online support, FORCE online one-on-one peer support through our Peer Navigator program. Our free program matches people considering genetic testing and/or facing hereditary cancer with a trained volunteer who has experienced a similar journey.
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