Study: How beneficial is online communication after a new diagnosis of breast cancer?
|At a glance
|Questions for your doctor
This study is about:
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.
Why is this study important?
Little is known about how newly diagnosed breast cancer patients use online communication in their decision making process.
- Newly diagnosed breast cancer patients who frequently used online communication were more satisfied with their decisions about treatment.
What does this mean for me?
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.
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This article is relevant for:
This article is also relevant for:
people with breast cancer
people with ER/PR + cancer
people with Her2-positive cancer
people with a genetic mutation linked to cancer risk
people with triple negative breast cancer
people newly diagnosed with cancer
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IN DEPTH REVIEW OF RESEARCH
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.
Researchers of this study wanted to know:
Does online communication change how newly diagnosed breast cancer patients view their treatment decision choice?
Population(s) looked at in the study:
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 () 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:
- how often the women used online communication (defined by the researchers as including email, texting, social media such as Twitter and Facebook, and/or web-based support groups) after their breast cancer diagnosis.
- how satisfied the women were with their choice of treatment.
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.
- About 41% of women reported that they had some or frequent use of online communication.
- The most common (about 35%) form of communication used was email and texting.
- About 12% of women used social media, and about 12% of women used web-based support groups.
- White and Asian women used online communication the most (about 46% of white women and about 43% of Asian women).
- Younger women (under age 50) with more education tended to use online communication more than older women.
- Women who frequently use online communication were more likely to report that they were satisfied with their treatment decision.
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 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 with a trained volunteer who has experienced a similar journey.
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Wallner LP, Martinez KA, Li Y, et al. “Use of Online Communication by Patients with Newly Diagnosed Breast Cancer During the Treatment Decision Process.” JAMA Oncology. Published online first on July 28, 2016.
FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
The National Comprehensive Cancer Network (NCCN) recommends screening and treatment of distress as part of the recommended standard of care.
These recommendations include:
- Healthcare providers should inform patients, families and treatment teams that distress management is a key part of their medical care, and they should provide information about psychosocial services.
- Ideally, healthcare providers should screen patients for distress at every medical visit— minimally at a patient’s initial visit and then as clinically indicated, especially with changes in disease status (i.e., remission, recurrence, progression or treatment-related complications).
- Healthcare providers should assess and manage distress according to clinical practice guidelines.
- Experts in psychosocial aspects of cancer should be readily available, either as staff members or by referral.
- Assessments should include psychosocial issues (e.g., quality of life and patient and family satisfaction).
Patients should expect to receive distress screening and help at your doctor visits. If your distress isn’t addressed, ask for help. NCCN provides a "Distress During Cancer Care" pamphlet that provides more information.
The American Society for Clinical Oncology (ASCO) points out several therapies for anxiety and stress for patients to consider during or after cancer treatment:
- meditation, particularly mindfulness stress-reduction programs
- music therapy
- stress management therapy.
- As a new breast cancer patient, what online support groups can I can join?
- What are the most trustworthy sites to find information on breast cancer?
- Are there local, in-person support groups that I can join?
The following studies on the emotional effects of cancer are enrolling patients:
- NCT04739696: Developing a Virtual Stress Management Intervention for Spousal/Partnered Caregivers of Solid Tumor Cancer Patients. This study will look at the ability of a stress management program for employed caregivers to improve psychological distress in spouses or partners who are caregivers for people diagnosis with a solid tumor cancer of any .
- NCT03581357: Mobile Mindfulness Meditation Intervention for Cancer Survivors. This will study the impact and satisfaction of Mobile Mindfulness Meditation on anxiety, pain, fatigue, trauma, and sleep in cancer survivors.
- NCT03611309: Perioperative Surrounding Cancer Surgery for Patients & Their Family Members (PERIOP-PC). The study goal is to compare surgeon-palliative care team co-management, versus surgeon alone management, of patients and family members preparing for major upper gastrointestinal cancer surgery.
- NCT04604158: Evaluating the Effect of a Mobile Audio Companion (Elly) to Reduce Anxiety in Cancer Patients. This is a study in cancer patients to examine the feasibility of a mobile health application, Elly (Elly Health Inc.), to reduce levels of anxiety, stress, loneliness, and social isolation.
- NCT03344757: Health Gatherings - For Your Health After Cancer. look at the effects of a 10-week stress management in-person group program. The program will study emotions, stress, and stress management techniques (such as relaxation and coping techniques) on quality of life, distress, depression, and physical health in Spanish- speaking, Hispanic/Latino men diagnosed with Cancer (PC).
- NCT05364450: Studying Types of Therapy for Coping With Fear of Recurrence Among Breast Cancer Survivors. Fear of breast cancer recurrence (FCR) is common. This study will test three types of online, group therapy for breast cancer survivors with FCR.
- NCT04583891: Mobile Apps to Reduce Distress in Breast Cancer Survivors Using an Adaptive Design. This project will look at using a mobile health app to address emotional distress in women with breast cancer, and test the impact of coaching as a way to increase engagement with the app.
- NCT02871752: Reducing the Effects of Active Surveillance Stress, Uncertainty and Rumination Thru Engagement in Mindfulness Education (REASSUREME). This study examines how well a couples-based mindfulness-based stress reduction (MBSR) works on positive and negative psychological responses to active surveillance (AS) and AS adherence.
- NCT03344757: Health Gatherings - For Your Health After Cancer. This study will look at the effects of a 10-week stress management in-person group program. The program will study the effects of stress, and stress management techniques on quality of life, distress, depression, and physical health in Spanish- speaking, Hispanic/Latino men diagnosed with cancer.
The following organizations offer peer support services for people with, or at high risk for breast cancer:
- FORCE peer support:
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Connect online with our Private Facebook Group.
- Join our virtual and in-person support meetings.
- Other organizations that offer breast cancer support:
Who covered this study?
Do patients use online communications following a new breast cancer diagnosis? This article rates 3.5 out of 5 stars
Online communications aid new breast cancer patients, but usage gaps persist This article rates 3.5 out of 5 stars
The Economic Times
How social media is helping breast cancer patients with treatment decisions This article rates 3.5 out of 5 stars
'Ppl, I have breast cancer' This article rates 3.5 out of 5 stars
Going online ups patients' satisfaction about tx decisions This article rates 2.5 out of 5 stars