Findings reveal patients lack critical information about diagnosis, clinical trials and treatment
CHICAGO, ILL- Complete findings from a survey of more than 1,800 meningioma patients and caregivers co-sponsored by the University of Toronto and the American Brain Tumor Association (ABTA) will be presented at the nonprofit’s annual Patient and Family Conference entitled, “Redefining Survivorship through Science, Technology and Clinical Innovation,” being held at the Westin O’Hare in Rosemont, Ill. on August 4-5.
"The purpose of our study was to gather the perceptions and experiences of patients and their caregivers around symptoms caused by their tumor as well as issues related to the management of their meningioma," said Elizabeth M. Wilson, ABTA president and CEO. "These findings are important as too many meningioma patients lack information regarding the diagnosis, treatment and available clinical trials for this tumor type. It is our hope that this study will begin to open up much needed and long overdue dialogue between patients and caregivers and their health care teams."
Preliminary findings were first presented at the 2016 ABTA conference by Gelareh Zadeh, MD, PhD, FRCSC, Clinical Scientist and Head of the Division of Surgical Oncology, Princess Margaret Cancer Centre, University Health Network in Toronto. After further analysis, Dr. Zadeh will deliver the full results during the session entitled, “Meningiomas and Fatigue”.
Meningiomas comprise over one third of all diagnosed central nervous system tumors. The World Health Organization (WHO) classifies as many as 20 percent of meningiomas as higher grade tumors. Yet, patient experiences and perceptions about the management of meningiomas are poorly understood. The study “A Survey on Disease Experiences of Meningioma Patients” looked into demographics, symptoms, treatment, support systems, involvement in clinical trials and effect on work and school.
The ABTA National Patient & Family Conference, Redefining Survivorship through Science, Technology and Clinical Innovation is being held at the Westin O’Hare in Rosemont, Ill., August 4-5. Advance registration is encouraged; walk-in registration will be based upon space availability.
To view the conference program and register, visit www.braintumorconference.org, or call 800-886-ABTA (2282) or email firstname.lastname@example.org.
ABOUT THE AMERICAN BRAIN TUMOR ASSOCIATION
Founded in 1973, the American Brain Tumor Association was the first national patient advocacy organization committed to funding brain tumor research and providing education and information for people of all tumor types and all ages. For more information, visit www.abta.org or call 800-886-ABTA (2282).
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