The Cancer Support Community (CSC), a nonprofit advocacy organization, recently released a research report about the emotional, social, and financial burdens on cancer patients. The survey found that gaps in communication between patients and care teams about cost of care resulted in “financial toxicity” for people living with cancer.
“Insight into the Patient Experience: Cancer Experience Registry Report 2017,” published by the CSC’s Research and Training Institute, uses the institute’s repository of clinical data from the Cancer Experience Registry, which includes over 12,000 patients and caregivers and 45 cancer types including multiple myeloma.
Regarding quality of life, key findings from the report included:
- Only 39% of cancer survivors rate their overall health as “very good” or “excellent.”
- About 53% of cancer survivors are worried about the future and what lies ahead.
- About 47% of cancer survivors are at risk for clinical depression.
Regarding treatment decision-making, the report found:
- 93% rated quality of life as a very important factor when weighing treatment options.
- about 24% did not feel prepared to discuss treatment options with their doctor.
- Only 45% decided on treatment together with their care team.
Regarding side-effects and symptom management, the report concluded that:
- One in five reported that the healthcare team did not explain short-term side effects.
- Only 52% said they received guidance on long-term side effects of treatment.
- About 14% did not tell their care team about side effects and symptoms.
Regarding clinical trials, the report concluded:
- That 43% thought lack of transportation would prevent them from participating in a clinical trial.
- About 77% believed that insurance would not cover clinical trial costs.
- And 76% feared receiving a placebo in a cancer clinical trial.
On financial impact, the report found:
- More than one in 10 patients postponed filling prescriptions to reduce costs.
- About 73% did not talk about costs of treatment with a member of the care team.
- And 30% depleted their savings because of treatment costs.
In addition to the report, the CSC released data from 10 specialty registries identifying the unique challenges of each cancer diagnosis, including myeloma, chronic lymphocytic leukemia (CLL), chronic myeloid leukemia (CML), and others.
“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,” Linda House, RN, BSN, MSM, president of CSC, said in a press release.
“Knowing that I am not alone in my cancer experience has been one of the things that keep me encouraged and motivated,” cancer survivor LaKeesha Murray said. “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.”