New York, Sept. 17, 2020 (GLOBE NEWSWIRE) -- The Cancer Support Community (CSC) released the findings of its 2020 Cancer Experience Registry Report. Capturing the voices of thousands of individuals affected by cancer, the report sheds light on the physical, emotional, social, practical, and financial aspects of the patient and caregiver experiences.

Of particular interest, the report’s financial-related findings show that seven out of 10 respondents reported that no one from their health care team talked to them about the cost of their care. In addition, one out of three participants said they depleted savings or used money from retirement to cover treatment costs, while others did not fill prescriptions due to costs, a decision which can negatively impact recovery and survival. The lack of communication about the financial consequences of cancer is particularly concerning given a recent Kaiser Family Foundation report estimating that, as of mid-May, 27 million Americans may have lost their health insurance amid rising unemployment.


“One of the primary reasons we do this research is to capture the experience of patients and caregivers that are not recorded anywhere else,” said Kim Thiboldeaux, CEO of the Cancer Support Community. “Our findings provide a list of tangible ways to improve patient care and communication with health professionals. For instance, we are in a moment when millions of Americans have lost health coverage in the wake of the economic downturn related to COVID-19, yet we document that, even in the best of circumstances, only 30 percent of patients talk to their medical teams about the cost of their care. We want to empower individuals affected by cancer to have an honest exchange about what their treatment will cost, especially if they’re experiencing economic turmoil.”


The data analyzed by the PhD-level teams at CSC’s Research & Training Institute in Philadelphia, identified several areas that, if addressed, should lead to superior care, improve quality of life, and increase access to required services. 

“The Cancer Support Community’s 2020 Cancer Experience Registry Report should be required reading for anyone who cares for people with cancer, to ensure that the patient remains at the center of all decisions and recommendations made by their care team,” Dr. Thomas Leblanc of Duke Cancer Institute said. “As an oncologist, palliative care physician, and patient experience researcher, I greatly appreciate and value this Registry, which captures thousands of patient and caregiver experiences in an unprecedented way. This extensive and deep report gives us an unmatched view of the cancer experience overall, along with a deeper dive into its 11 specific cancer focus areas, allowing us to better understand similarities, differences, and opportunities to improve care.”


The Anxiety Question We Should Be Asking Cancer Patients

  • One-half of Registry participants were at risk for clinically significant anxiety, while four out of 10 were at risk for clinically significant depression.
  • Patients have long been screened for depression, but new federal clinical guidelines and standards, most notably from the Commission on Cancer Care, also require that patients be screened more comprehensively for psychosocial distress, which can be an important tool in helping identify sources of anxiety.

Not routinely providing comprehensive psychosocial distress screening means that practitioners could be missing meaningful information about the mental health of the patient, resulting in an incomplete assessment of their status and potentially insufficient response from their care team. 


Innovators and Regulators Must Improve Ways to Capture Patient Experience

Recognizing that patients are the foremost experts in their disease, their experiences living with, treating, and/or managing their disease provides crucial information not otherwise captured through the clinical trial process. Side effects can impact outcomes in overall quality of life and long-term side effects can impact ability to return to work, an increasingly critical issue as survivorship rates progress.. Clinical trial design, trial endpoint selection, regulatory reviews, and post-market surveillance should all include the collection, measurement, and incorporation of patient experience data.

  • Nine out of 10 respondents rated quality of life as a very important factor when weighing treatment options whereas regulatory stakeholders and clinicians continue to focus on survival measures as the ultimate outcomes measure.
  • Four out of 10 respondents felt inadequately prepared to manage the side effects of treatment.
  • Another four out of 10 did not recall receiving information about long- term side effects of treatment.
  • Importantly, one out of three held back from telling their healthcare team about side effects and symptoms.


Attention Must Be Paid to Caregivers

  • One-half of caregiver respondents reported anxiety levels that were substantially worse than the national average.
  • One out of three experienced fatigue and/or depression levels that were substantially worse. 
  • The fatigue, in particular, is consistent with the substantial support caregivers provide.
    • Some caregivers in our Registry reported providing over 100 hours of care per week, and many reported a decline in their own personal health.

Cancer is a family disease and the impact to caregivers must not be overlooked. Supporting caregivers is an ongoing health care need and vital to achieving the best health outcomes for the patient. The role of the caregiver cannot be overstated. 


Thiboldeaux added, “This unique research reveals a deeper, more personal account of what challenges, choices, and changes face individuals dealing with a cancer diagnosis. What’s more, this perspective underscores a core reality: behind every diagnosis is a real person, a family, and a team of caregivers invested in the best possible outcomes.”


Read the entire report here


Nathalie Casthely
Cancer Support Community