Study: FORCE online survey: What breast cancer information do young women want and where do they look for it?

IN-DEPTH REVIEW OF RESEARCH
Study background:

FORCE (Facing Our Risk of Cancer Empowered) is a non-profit organization that provides support, information and advocacy services to families who face hereditary breast, ovarian and related cancers. With funding from the CDC, FORCE established the XRAYS program, which provides online articles that summarize recent research that is relevant to young breast cancer previvors, patients and survivors.

XRAYS staff developed rubrics that rate the quality and relevance of research, the quality of media reporting and offer questions users may want to address with health care providers.

To ensure that the XRAYS program responds to our community’s needs, FORCE conducted an online survey to identify the information needs and media used by young breast cancer survivors and young women at high risk.

Researchers of this study wanted to know:

• How frequently women visit various media sources and health-related or cancer-related websites for information on breast cancer screening, treatment, surgery, prevention, genetics or survivorship.
• To what degree women trust these information sources.
• Whether respondents have ever shared media reports with their health providers and how that information was received.
• At what point in the process of screening, diagnosis, treatment, survivorship and/or risk management respondents actively seek out information.

Study design:

Eligible survey participants were women between 18 and 45 years old who had a history of breast cancer or who tested positive for a mutation that significantly increased their risk. This population was chosen to match the target population of the CDC funding mechanism.

FORCE launched the national online survey via a network of 50 FORCE outreach groups and partner organizations (at the time Living Beyond Breast Cancer, Young Survivors Coalition, Tigerlily Foundation and Triple Step to the Cure) that serve young breast cancer survivors.

The survey was also promoted to a list of social media influencers created by Red Bamboo Marketing and paid ads.  This social media campaign targeted breast cancer survivors age 45 or younger and women at high-risk women due to a known mutation (BRCA1, BRCA2 or other high risk genes) or family history.

The survey was administered from March 15 through June 30, 2015, and

1,178 eligible women responded. More than one-third of eligible participants (35.5%) linked to the survey through existing FORCE communication resources.

Study findings:

Among all respondents:

• 1,050 (90%) were between the ages of 31 and 45. 
  • 128 (10.8%) were between the ages of 18 and 30.
• 989 (84%) were White/Non-Hispanic. 
• 454 (38.5%) reported a breast cancer diagnosis.
• 387 (33%) did not have a breast cancer diagnosis. 
• 331 (28%) respondents did not report whether or not they had a breast cancer diagnosis.

Respondents reported the types of information resources they used at least occasionally, including:

• non-profit organizations’ health information web sites (~85%)
• health news websites (~80%)
• Facebook (~75%)
• online health blogs (~67%)
• radio/television broadcast news (~67%)

The survey also asked whether the women had discussed media health reports with their health care providers: 833 respondents (70%) answered this question:

• 298 of (36%) indicated that they had shared a health-related article or report.
• 405 (49%) reported not sharing this type of information.
• 130 (15%) reported that they did not recall whether they had shared this type of information.

Asked to share their health care providers’ responses to sharing of media reports, only 47 respondents responded.  Of these:

• 39 (83%) reported positive reaction from health care providers.
• 8 (17%) reported a negative reaction.

Survey results indicated that a young woman’s age, income, education or previvor or survivor status did not vary how they sought information. Some relationships, however, were identified between demographics and information seeking.

• Women with a high school education or less were not as likely to seek information.
• Nearly half (47%) of women between 31 and 35 who were diagnosed with breast cancer reported frequently looking for information about participating in research:
  • This percentage decreased as age increased: 38% of women between ages 36 to 40 and 29% of women between ages 41 to 45. 
  • Only 16% of women between ages 26 to 30 reported that they frequently look for information about participating in research.
• 43% of women who were diagnosed with breast cancer and who had annual household incomes of at least $50,000 said that they frequently use media to find information about risk-reducing ovary removal:
  • 26% of women with an annual household income below $25,000 and 30% of women with an annual household income between $25,000-$49,000 reported doing so.
• Women ages 18–35 were more likely (44%) than women ages 36–45 (17.5%) to frequently seek information about fertility.
• Only 12% of women with a high school education or less reported sharing information learned from media with medical care providers, compared with 25–30% of women who had some college education.
• The percentage of women who shared information learned from media with family and friends increased with education:
  • Only about one-third (32%) of women with a high school education or less reported doing so.
  • About half of those with some college (46%) or a BA/BS degree (52%) shared information with family and friends.
  • More than half (58%) of women with a graduate degree shared breast cancer-related information they had learned from the media with family and friends.

These results show that the women with a college or graduate degree are more likely to share medical information.  This observation highlights the benefit of working to expand this population.  To that end, FORCE has used these survey results as an opportunity to work to increase XRAYS’s outreach.

Limitations:

Most respondents were FORCE constituents, therefore skewing results, which are not representative of a broad national survey. Conducting the survey online was a minor limitation, which likely biased results to women who have access to and use the Internet as a health information source.

We note in the discussion that the survey reached primarily white, upper income women. It is more of a comment of FORCE’s reach at the time than on XRAYS specifically because we were not publishing XRAYS at the time of the survey.

Conclusions:

These results indicate that there is a need for credible resources to support women when evaluating breast cancer research reported in the media.

Importantly, the results suggest that topics of interest to the target audience are not uniquely reserved to breast cancer survivors. Previvors also need credible information about the latest research and recommendations regarding genetic testing, as well as benefits and risks of prevention options.  They also guided FORCE’s ongoing efforts to use targeted strategies to reach a more diverse community.

Posted 1/18/19