Elevating the Patient Voice: Study Finds Patients Not Prepared to Discuss Treatment Options

A study released by the international nonprofit Cancer Support Community found that more than half of patients with cancer feel unprepared to discuss treatment options with their medical team, a significant finding given the high burden patients with cancer carry across a number of dimensions.

In particular, the research found that patients are living with additional toxicities that include, yet also extend beyond, the physical. The report found:

• Challenges around the cost of cancer care: About one-third of patients said that they had to reduce their grocery expenses, and one-third said that they had depleted their savings due to cancer-related costs. Forty-five percent of patients with metastatic breast cancer lost their jobs—about half involuntarily—due to cancer.
• Concerns about long-term side effects: nearly half (42%) of patients are seriously concerned about nutrition, and about a third (32% and 34%, respectively) are seriously concerned about fatigue and exercise.
• Ongoing need for social and emotional support: 37% of patients have serious worries about the future, and 35% have serious financial worries.

Elevating the Patient Voice, the 2014 Annual Report of the Cancer Experience Registry, looked at 3500 of the more than 7300 people in the registry to identify social, emotional, and financial needs of people living with cancer. Highlights of the study presented today are available online here.

“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, PhD, vice president of research and training of the Cancer Support Community.

This first-of-its-kind registry consists of items that 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.

“I was in so much emotional distress, I cried all the time….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,” said Linda P, a member of the registry who was diagnosed with breast cancer in 2010, two weeks after starting a new job—after having been laid off for several months. “I signed up for the Cancer Experience Registry to give back to other women going through what I did, let them know that they can get through it.”

The registry also includes specialized communities designed specifically for people who have experienced breast cancer, metastatic breast cancer, multiple myeloma, chronic myeloid leukemia, and more to come. These specialized communities will help to further identify the unique needs of these groups.

“The cost of living with cancer is high — both in dollars and in collateral damage. As patients continue to share their stories through the registry, the Cancer Support Community seeks to provide new hope strategies for moving the cancer community towards improving patient outcomes and reducing the cost of care,” said Kim Thiboldeaux, president and CEO of the Cancer Support Community.

The full 2014 Cancer Experience Registry Report, “Elevating the Patient Voice” is available online at www.CancerSupportCommunity.org. Anyone who has been diagnosed with cancer at any time is invited and encouraged to join the registry by visiting www.CancerExperienceRegistry.org.