40-40 Cancer Support Community Reports on Patient Experiences

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Cancer Support Community Reports on Patient Experiences

Cancer Support Community released the findings report from the first year-and-a-half of the Cancer Experience Registry.

The report, titled “Elevating the Patient Voice,” examined responses from 3,500 registry members (out of more than 7,000 total members), and found that more than half of patients with cancer feel unprepared to discuss treatment options with their medical team.

Findings included:

Challenges around the cost of cancer care: about one-third of patients said they had to reduce their grocery expenses, and one-third said they depleted their savings due to cancer-related costs.

Concerns about long-term side effects: 42 percent of patients are seriously concerned about nutrition, and about a third are seriously concerned about fatigue and exercise, or 32 and 34 percent, respectively.

An ongoing need for social and emotional support:37 percent of patients have serious worries about the future, and 35 percent have serious financial worries.

This research also found that patients are living with additional physical, financial and emotional concerns.

“We hear over and over that patients feel uncomfortable bringing up their issues with their doctors,” said Joanne Buzaglo, vice president of research and training at CSC. “They don’t want to bother them, or be seen as a ‘bad patient.’ We put a lot of effort into asking questions that are sensitive to our population—and our respondents often tell us, ‘no one ever asked me that before.’”

This first-of-its-kind registry aims to measure the total cancer experience, including the physical, social, emotional, spiritual and financial effects of cancer on the person diagnosed as well as his or her family.

After completing the registry profile and questionnaire, members can compare their responses with others in the community and can be connected to online educational content relevant to their concerns and interests.

The registry is available to anyone who has been diagnosed with cancer at any time.


President Joe Biden’s proposed Advanced Research Projects Agency-Health would be a welcome partner to NCI—particularly in conducting large, collaborative clinical investigations, NCI Director Ned Sharpless said.“I think having ARPA-H as part of the NIH is good for the NCI,” Sharpless said April 11 in his remarks at the annual meeting of the American Association for Cancer Research. “How this would fit with the ongoing efforts in cancer at the NCI is still something to work out.”