Since its launch in March 2013, the Cancer Support Community has asked people impacted by any type or stage of cancer to share the issues and concerns that defined their cancer journey with the Cancer Experience Registry. As of today, more than 7,000 participants have done exactly that, and have helped identify the social, emotional and financial needs of people living with cancer.
Today, the Cancer Support Community is excited to announce that the index report of these findings, Elevating the Patient Voice, is now available online! The Cancer Support Community will be commemorating the release of the first year findings at a presentation and reception at CSC’s Research and Training Institute in Philadelphia, PA. The event features Keynote Speaker Peter Bach, MD of Memorial Sloan-Kettering Cancer Center, who has shared his experience as a physician and caregiver for his wife after her diagnosis, treatment and death from cancer.
What have we learned from the Registry findings so far?
- There are significant challenges regarding the cost of cancer care. About one-third of patients reported having to reduce their grocery expenses, and one-third have depleted their savings due to cancer-related costs.
- Many people are concerned about long-term side effects. Nearly half (42 percent) of patients are seriously concerned about nutrition, and about a third (32 percent and 34 percent, respectively) are seriously concerned about fatigue and exercise.
- There is 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.
How will the Registry help people impacted by cancer?
The Cancer Experience Registry is the first of its kind, and it consists of items that measure the total cancer experience on the person diagnosed as well as his or her family. After completing the profile and questionnaire, members can compare their responses with others in the community and be connected to online educational content relevant to their concerns and interests.
“We hear over and over that patients feel uncomfortable bringing up their issues with their doctors. 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,’” said Joanne Buzaglo, Ph.D., VP of Research and Training at CSC.
More highlights from the Registry data and more patient stories can be found in Elevating the Patient Voice, and for insights and updates from the event follow CSC on Twitter @CancerSupportCM.
Anyone who has ever been diagnosed by cancer at any time is invited and encouraged to join the Cancer Experience Registry. Click here to get started.
“I cried all the time. I was so anxious and afraid. It was like nothing I had ever experienced. It made a huge difference when I told my manager what was happening and he told me that he was a melanoma survivor. He said my job was safe and I should do whatever I needed to take care of my cancer. I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know they can get through it” – Linda P., Cancer Experience Registry Member