Nearly half of cancer patients cannot correctly answer basic questions about their disease, according to a local study that experts say has national implications.
The medical community uses a four-stage terminology to describe how advanced cancer is at first diagnosis, with Stage 4 indicating the most advanced disease.
Of 208 patients surveyed in 2014 at Ann B. Barshinger Cancer Institute of Lancaster General Health/Penn Medicine, 49 percent got the stage of the cancer wrong.
And when they were asked the status of their disease — cancer-free, in remission or active cancer — only two-thirds answered correctly.
“It has been well documented that patients with advanced cancer are more likely to choose aggressive end-of-life care when they have a poor understanding of their illness,” said the study, which was published recently in the American Society of Clinical Oncology. “This raises significant concerns regarding the informed consent process and our ability to provide care that truly aligns with patient preferences and goals of care.”
Overall, women and those under age 65, earning more than $60,000 or having more education being more likely to correctly report their cancer’s stage and status.
Lancaster General hematologist and oncologist Dr. Shanthi Sivendran was lead author of the study, which included researchers from Mayo Clinic and American Institutes for Research.
She said there have been multiple studies elsewhere with similar findings on people with advanced cancer, but she wanted to see if patients whose cancer is curable also have a poor understanding of their illness.
The answer was yes.
Sivendran said although the study is small, she believes it accurately reflects the national reality on cancer treatment.
For doctors, she said, the findings are a reminder of the importance of communication.
And for patients, she said, this is why it’s a good idea to bring someone along to appointments.
“When people get bad news or information that’s distressing, oftentimes people don’t synthesize that information on the first go-round, and it’s great to have other people to help process that information,” she said.
Dr. Randall Oyer, who directs the Barshinger institute, said the survey was taken before the institute started a new program last summer that emphasizes clear communication, among other things.
He said that reflects a needed movement “to be more intentional about actually taking a pause and making sure people understand the information, making sure people have time for questions, making sure that we put on the table that this is about you, your values, your goals, and giving people time to consider and come back and ask questions.”
And, he said, “I do think people will make different decisions if they have enough information to understand what the future might look like, what they can expect from treatments, how they can accomplish what’s important to them.”
Dr. Kristina Newport is director of outpatient palliative care at Hospice & Community Care, which works with Barshinger, and helped with the study.
“Patients are often afraid to ask (because they would rather not face the answer) and clinicians sometimes avoid the topic because it is difficult to face on both sides,” she said in an email. “It is simply an issue that the entire field needs to improve upon.”
She repeated Sivendran’s advice that patients bring someone with them to appointments, and said question prompt lists designed to guide communication with health care providers can be helpful.
But, she said, people should rely on reputable sources like the American Cancer Society, the Nation Institutes of Health or the Mayo Clinic.
“We find that Internet sites like message boards can cause distress and are a source of misinformation because they reflect the experience of only one person who may or may not have a condition similar to the patient,” she said.