Persisting Gaps in Cancer Care Negatively Impact Patient Outcomes

PHILADELPHIA, PA – August 2017 – The Cancer Support Community (CSC), an international nonprofit organization, released a research report that found the scarcity of communication between patients and their care team about cost-of-care resulted in financial toxicity for patients living with cancer. In addition, nearly half (47 percent) of patients are identified as at risk for clinically significant levels of depression. Key findings from the report:   *   93 percent of patients said quality of life is a very important factor when weighing treatment options   *   73 percent of patients reported not discussing the cost of care with their care team   *   43 percent of patients noted lack of transportation as an obstacle stopping them from participating in a clinical trial   *   30 percent of patients surveyed said they depleted their savings because of treatment costs Insight into the Patient Experience: Cancer Experience Registry Report 2017 is the second report published by CSC’s Research and Training Institute using its repository of clinical data from the Cancer Experience Registry that includes over 12,000 patients and caregivers of 45 cancer types. “Traditional big data helps us personalize treatment, but when you do not account for the patient’s attitudes, beliefs, and behaviors it can derail the entire treatment plan leading to poor quality of care and patient outcomes,” said Linda House, RN, BSN, MSM, President of CSC. The Registry found that patients’ adherence to treatment is poorer when emotional distress and financial burden are high. Specifically, patients experiencing financial burden and at high risk for depression were significantly more likely to have suboptimal adherence than patients experiencing only financial burden. “This report will help the patient and his or her care team identify areas where they can work together to improve communication,” said Joanne Buzaglo, Ph.D., Senior Vice President of Research and Training of CSC. “Furthermore, the tremendous growth of the Registry demonstrates that patients and caregivers want to join and share their cancer experience.” “Knowing that I am not alone in my cancer experience has been one of the things that keep me encouraged and motivated,” said LaKeesha Murray, a cancer survivor. “Through the Cancer Experience Registry, I can make a difference by sharing my story and helping shape new programs for those at CSC of Greater Philadelphia and worldwide, while advancing research for myself and others living with Cancer.” Along with the Insight report, CSC is releasing data from 10 Specialty Registries to identify the unique challenges of each cancer diagnosis including patients with breast cancer, chronic lymphocytic leukemia, chronic myeloid leukemia, lung cancer, melanoma, metastatic breast cancer, multiple myeloma, prostate cancer, and stomach (gastric and gastro-esophageal) cancer, as well as caregivers. Featured speakers at the report release include:   *   Yousuf Zafar, MD, MHS, Associate Professor of Medicine and Public Policy, Member of Duke Cancer Institute   *   Craig E. Cole, MD, Assistant Professor, University of Michigan   *   LaKeesha Murray, Breast Cancer Patient, Member of the Cancer Support Community of Greater Philadelphia Follow the conversation on social media by using the hashtag #CancerInsights. For more information about Insight into the Patient Experience: Cancer Experience Registry Report 2017, please visit: www.cancersupportcommunity.org/RegistryIndexReport2017 About Gilda’s Club Free of charge, Gilda’s Club Quad Cities provides support, education and hope to all people affected by cancer.  As a Cancer Support Community affiliate, we are part of the largest employer of psychosocial oncology mental health professionals in the United States.  Our global network brings the highest quality cancer support to the millions of people touched by cancer. About Cancer Support Community As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit www.CancerSupportCommunity.org. So that no one faces cancer alone® # # #