Despite a record 15.5 million cancer survivors in the U.S.1 – a number expected to grow to nearly 20 million by 20261 – there has been surprisingly little comprehensive research done on how people experience life with and beyond cancer. CancerCare, working with an advisory board of oncologists, researchers and cancer advocates, conducted a landmark study to expand knowledge and provide new insights around those experiences, which are increasingly varied as a result of rapidly changing treatment options, care delivery and payment models.
The study consisted of six surveys on real world topics that impact patients everyday: understanding the diagnosis of cancer; participation in treatment decisions and planning; communication with the care team; financial and insurance issues; symptoms, side effects and quality of life; and survivorship. With sample sizes of at least 500 respondents each, diverse in variables including age, gender, ethnicity, education, income, geography, cancer type and stage, more than 3,000 unique adults shared their experiences and perceptions. It is the first research of its kind to tackle this depth and breadth of issues across a diverse population of cancer patients.
Survey recruitment was done via email from online consumer panels. Each survey, was designed to reflect a nationally representative sample.
The report provides insight and context regarding a great many aspects of patients’ cancer experiences, illuminating the gaps in care, identifying barriers to their engagement with care providers, and highlighting the physical, emotional, and financial toll of the illness on survivors.
- One-quarter of respondents ages 25 to 54 disagreed with some of their doctors’ recommendations for diagnostic testing and did not follow them, with the majority citing cost as the reason.
- Only 12% to 18% of respondents felt adequately informed about clinical trial opportunities.
- 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.
- Only about one-half of respondents reported understanding their health insurance coverage for their cancer care “completely” or “very well.”
- One-quarter to one-third of respondents said their ability to perform day-to-day activities such as working, exercising, entertaining friends and family, caring for children and preparing meals, was dramatically compromised.
- Respondents from all age groups had widespread misconceptions about palliative and hospice care.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in person, educational workshops, publications and financial and copayment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts.
We hear firsthand from clients of the myriad struggles they experience in life with and beyond cancer, exacerbated by rapidly changing treatment options, care delivery and payment models. To gain an even better and broader understanding and appreciation for the needs of people affected by cancer —and how best to serve and engage them—we commissioned this research. The results are helping CancerCare and others to more effectively represent the concerns of survivors, advocate for better access to the most advanced care, and define and promote patient engagement to improve survivors’ quality of life and optimize their disease outcomes. Visit the CancerCare website to read more and download the 2016 CancerCare Patient Access and Engagement Report.
- National Cancer Institute Division of Cancer Control & Population Sciences (2016). Statistics. Available at: http://cancercontrol.cancer.gov/ocs/statistics/statistics.html (accessed September 2016)