CancerCare, a national nonprofit organization that provides psychosocial support, education, and financial assistance to anyone affected by cancer. has release a landmark report illustrating the many physical, emotional, financial, practical, and informational needs patients with cancer experience during and after clinical treatment.
The 2016 Patient Access and Engagement Report
reflects the perspectives of more than 3000 patients diverse in ethnicity, income, education, geography, age, insurance, cancer type, and treatment stage regarding their understanding of their diagnosis and access to care, participation in treatment planning, communication and engagement with providers, insurance and financial issues, the impact of cancer on quality of life, and issues related to survivorship.
Key findings include:
- Only about one-half of respondents reported understanding their health insurance coverage for their cancer care “completely” or “very well.”
- When agreeing to a treatment plan, more than 40% did not have enough information on the risks of their treatment plan; more than half didn’t know enough about whether they would be able to work during treatment; how much home care was required; the emotional impact of having cancer and its treatment; and their financial obligations for the cost of care.
- Among those aged 25-54, three-quarters said their cancer treatment caused them financial hardship.
- 58% of respondents reporting being distressed about their finances during treatment,
- About 20% of African American and Hispanic respondents reported they experienced serious communication problems with their clinical care team, including a lack of translation services; difficulty understanding what their doctors said about their treatment; and discomfort talking about how cultural, religious, and personal values affected their treatment.
“Cancer takes its toll in many ways, some of which last for years and cause debilitating distress for patients and families,” explains Patricia J. Goldsmith, CancerCare Chief Executive Officer. “This report, reflecting the input of thousands of patients, sheds light on the important issues affecting patients’ lives during and beyond a cancer diagnosis. CancerCare conducted this study to learn more about how patients experience life after a cancer diagnosis, in order to inform our program development and most accurately represent and address the needs of patients throughout their continuum of care and after clinical treatment is complete.”
and chart deck, downloadable and available free of charge, provide details and data from six separate online surveys, each completed from July to November of 2015.