LBBC Study Shows Low-Income Women With Breast Cancer Have Higher Interest in Clinical Trials, Insurance, Pain Management
Women with annual income below $50,000 are more likely to express interest in clinical trials than women with incomes above $50,000, according to a study conducted by Living Beyond Breast Cancer, the national education and support organization. The analysis, from a 2014 survey of women with breast cancer, will be presented at a poster session at the San Antonio Breast Cancer Symposium at the Henry B. Gonzalez Convention Center on Friday, December 11, from 5-7 pm CST in Exhibit Hall A-B, Posters P5-09-09 and P5-09-10.
An online, 80-question survey to which 2,636 U.S. women affected by breast cancer responded between November 25, 2013, and January 10, 2014, demonstrated that the educational topics of interest to them vary among age and income groups. All women, regardless of age or income, reported high levels of interest in staying informed about new treatments and research. However, lower income women reported greater interest in clinical trials, dating, pain management and health insurance. Higher income women reported higher levels of interest in sexuality and parenting issues.
Understanding the unique educational needs of lower income women and developing targeted interventions to address them could encourage greater participation in clinical trials for which they might qualify, concluded co-investigators Janine E. Guglielmino, MA, and Kathleen Swiger, MPH. Currently, only approximately 3% of eligible adult patients enroll in cancer clinical trials in the United States.
“LBBC is committed to getting information to every person who needs it, including those most vulnerable to receiving less than optimal cancer care,” said Guglielmino, LBBC’s senior director for programs and partnerships. “Clinical trials are an opportunity for people to access state-of-the-art care and to contribute a valuable perspective to cancer research. In addition, our study also showed lower-income women have greater interest in pain management, which our team speculated could be due to having fewer resources to manage their pain and side effects. Everyone with cancer deserves the information they need to manage the pain and side effects of cancer treatment that impact their quality of life.”
Partly in response to the survey findings, LBBC is in the process of producing a comprehensive, accessible guide to the clinical trial process for breast cancer patients of all ages and income levels. The guide will be available for free download in early 2016 at LBBC.ORG.
The survey asked women to indicate their level of interest in 35 educational topics as “Not Interested,” “Interested,” and “Very Interested.” The responses were then examined in light of self-reported demographic data. The correlations between age and topics of interest, while perhaps unsurprising—younger women were more interested in learning about fertility preservation, breast reconstruction, and early menopause than older women, for example, and less interested in hospice and end-of-life care—were still significant and support the tailoring of information to specific age groups.
Taking into account the impact of age on educational topic preference could enable the health care team to focus on issues of greatest interest at a time when face-to-face interactions continue to be reduced, investigators concluded. The age of survey respondents ranged from 17-80; the average age was 53.
“The research reinforces our approach to support the unique needs of young women,” said Living Beyond Breast Cancer CEO Jean A. Sachs, MSS, MLSP. “Awarded grants from the Centers for Disease Control and Prevention for the past six years, we have designed and delivered specific programming with blogs, videos, workshops, a young advocate program, and other resources highlighted in a separate portal on our website.”
LBBC worked in cooperation with oncologists and researchers at Piedmont Research Strategies, Inc., Greensboro, North Carolina; University of California San Francisco, San Francisco, California; University of Pennsylvania, Philadelphia, Pennsylvania; University of North Carolina Chapel Hill, Chapel Hill, North Carolina; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania; and the Triple Negative Breast Cancer Foundation, Norwood, NJ.