First nationwide volunteer network to connect brain tumor patients and caregivers
Chicago, Ill., May 1, 2015 – New findings released today from a poll conducted by the American Brain Tumor Association (ABTA) show that people diagnosed with a brain tumor needed more information about their diagnosis and treatment options, including clinical trials, at the time of diagnosis, and had only a matter of days to make difficult decisions about their course of treatment. The release of these findings corresponds with the launch of the first nationwide brain tumor volunteer network, the ABTA CommYOUnity™, dedicated to serving the brain tumor population and cause.
“A brain tumor diagnosis is often met with shock. For all but a tiny percentage, there is no family history, and the diagnosis seemingly comes out of nowhere,” said American Brain Tumor Association President and CEO Elizabeth M. Wilson, MNA. “This poll underscores the extreme pressure families are under to make decisions about a course of treatment when at the same time they are reporting that they need more information to make those decisions.”
To fill these gaps, the American Brain Tumor Association has launched a nationwide volunteer network, called the ABTA CommYOUnity™, to foster connections among brain tumor patients and the range of services and resources available to them locally and through the ABTA. “Our goal is to reach more people, in more places and in more meaningful ways,” Wilson said.
The ABTA conducted the web-based poll from February 24 through March 22, 2015, to gain more insight into the brain tumor diagnosis experience and to better understand what information is needed at the point of diagnosis and throughout the trajectory of the disease. More than 2,300 completed the online questionnaire.
Thirty-four percent of respondents consisting of patients, caregivers, and long-term survivors reported that it took a few days or less to receive a diagnosis after symptoms were first experienced, compared to 27 percent who reported their diagnosis took six months or more. According to Wilson, “This may reflect a need for greater awareness of symptoms as well as an overall understanding of the disease.”
Poll results also indicate that for many, basic information important for understanding the diagnosis and treatment options is lacking.
- Sixty-seven percent reported having only a few days or less to make treatment decisions.
- Forty percent of respondents did not feel they had sufficient information to make treatment decisions.
- Forty-two percent stated knowing the questions to ask their healthcare team was the most important information they wish they would have had at the time of diagnosis.
Additional findings from the poll show that physician recommendations most influenced treatment decisions (68 percent). Sixty percent reported that they were not given or referred to resources for more information. Forty-four percent of respondents turned to the Internet for more information.
“As the convergence of science and technology ushers in an era of a more personalized approach to brain tumor treatment and care, the ABTA is committed to ensuring that knowledge of and access to these advances are available to brain tumor patients and families,” said Wilson. “The ABTA CommYOUnity™ is designed to bring together the resources necessary to make known the information and supportive services available locally and through the ABTA.”
About the ABTA CommYOUnity™
The ABTA CommYOUnity is the first national volunteer network dedicated to serving the brain tumor population and cause. It is an outgrowth of surveys and focus groups conducted with healthcare professionals, and patients and caregivers across the country to identify the most pressing needs for patients and families upon receiving and living with a brain tumor diagnosis. ABTA CommYOUnity™ offers activities across four core program areas to advance a shared mission while providing opportunities for meaningful volunteer engagement. To learn more about ABTA CommYOUnity™ and volunteer opportunities, go to www.abta.org.
ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION
Founded in 1973, the American Brain Tumor Association was first and is now the only national organization committed to funding brain tumor research and providing information and education on all tumor types for all age groups. For more information, visit http://www.abta.org or call 1-800-886-ABTA (2282).
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Poll Executive Summary (PDF)