A report released by The Cancer Support Community (CSC), an international nonprofit organization, showed that the scarcity of communication between patients and their care team about cost-of-care resulted in financial toxicity for patients living with cancer. [1]

In addition, the report showed that nearly half (47%) of patients are identified as at risk for clinically significant levels of depression.

Key findings from the report:

  • 93% of patients said quality of life is a very important factor when weighing treatment options
  • 73% of patients reported not discussing the cost of care with their care team
  • 43% of patients noted lack of transportation as an obstacle stopping them from participating in a clinical trial
  • 30% 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.

Infographic: The Cancer Support Community hosted an educational event to present the key findings and survey results from the Cancer Experience Registry. The report, the second since the Registry?s inception, presents analysis of survey responses from a subset of Registry participants. The goal of this project is to better understand patients? experiences by providing a forum for people to share their voices about issues that matter to them, connect with each other. Findings from this report will be communicated to the broader cancer community with the goal of making a difference in how people move through their cancer journey. The Registry documents insights from patients across the cancer experience spectrum, illuminates key areas that impact patients? lives and informs stakeholders looking for data-driven care solutions and broad system change.

?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,? noted Linda House, RN, BSN, MSM, President of CSC.

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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 sub-optimal adherence than patients experiencing only financial burden.

?This report will help the patient and their care team identify areas where they can work together to communicate better on,? Joanne Buzaglo, Ph.D., Senior Vice President of Research and Training of CSC. ?Furthermore, the tremendous growth of the Registry, demonstrate the need from patients and caregivers wanting 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.

Last editorial review: July 18, 2017

Featured Image: Cancer Patient and Nurse. Courtesy: ? 2017. Fotolia. Used with permission.

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