Prior to his diagnosis with multiple myeloma, Tom Brokaw addressed a class of doctors at a medical school commencement. “Most patients enter a doctor’s office or a hospital as if it were a Mayan temple, representing an ancient and mysterious culture with no language in common with the visitor,” the journalist and author said.
A diagnosis of cancer comes with new vocabulary—words like palliative and biopsy. Even familiar words, like maintenance and stage, become foreign in an oncology setting. With confusing words comes the potential for misunderstanding, and with misunderstanding comes a threat to the informed consent process, as well as treatment outcomes.
To address these gaps in understanding, a team of researchers made a series of short videos to better explain frequently misunderstood terminology to patients receiving chemotherapy at Grady Memorial Hospital in Atlanta. Watching the videos improved patients’ understanding of six out of six featured terms, according to a study published Aug. 16, 2019, in Cancer.
“Patients need to participate in their decisions about treatment, and if they do not understand the basic terms, they won’t be able to do that,” says study co-author Rebecca D. Pentz, who studies research ethics at Emory School of Medicine in Atlanta.
A patient cannot consent to a treatment if she does not understand the words that explain it, nor can she communicate effectively about side effects if she does not recognize the symptoms her doctor is asking about.
Pentz enlisted a panel of oncologists, surgeons, health literacy experts and a social worker to help design the study and videos. Three of the panel members were also authors of the paper. Using the input of providers and patients, as well as direct observation of conversations between patients and providers, the group identified 20 terms that were crucial to informed consent yet frequently misunderstood. Some terms were expected, Pentz says; she expected palliative and maintenance to be on the list. But several terms that patients found confusing surprised her, including cancer and chemotherapy. For example, two incorrect definitions of chemotherapy included “shots to manage pain” and “doctor visits.”
The panel next chose six terms and designed educational videos that centered around easy-to-understand definitions. The health literacy experts suggested that the educational videos be brief—about one minute long—and highly pictorial.
Next, they began a pilot test to assess 50 patients’ knowledge of the terms: palliative chemotherapy, curative, cancer, blood count, risk of infection and chemotherapy. The patients, who were all receiving chemotherapy or planning to receive chemotherapy at Grady, were asked to define each word before watching a video and again after watching the video.
The videos improved understanding of all six terms. For example, no patient could define palliative chemotherapy before watching the video. After watching the video, however, 72% could define it correctly. The proportion of participants who could define curative treatment correctly was 34% initially; after watching the video, it grew to 88%.
Understanding chemotherapy-related terms can help patients make more informed choices about their treatment.
When patients don’t understand chemotherapy-related terminology, it hinders informed consent and communication with their providers. Below are some examples of the terms that Rebecca D. Pentz of Emory School of Medicine in Atlanta and her team used in an explanatory video series, as well as a few of the incorrect definitions that patients provided.
CORRECT: A small piece of the part of the body that may not be normal that is removed from a patient and studied. Biopsies can be used to find cancer and to help guide cancer treatment decisions.
INCORRECT: Something that you take like a medicine. Observing. A cut. A machine. A surgery to take the cancer out.
CORRECT: Feeling that you want to throw up. Other signs include an upset stomach and sweating more than normal.
INCORRECT: Light-headed, weak. Sleepy. Drowsy. Diarrhea.
CORRECT: The loss of feeling in your arm, leg, hand, foot, fingers or toes. The loss of feeling does not have to be complete. The affected areas can also suffer from “pins and needles”—an uncomfortable feeling of pain and tingling.
INCORRECT: Feeling cold. When you are sick.
CORRECT: Treatment using radiation, either sent from a large machine and/or inserted with needles directly into the area needing treatment. It can be used in addition to or in place of surgery or chemotherapy to treat cancer.
INCORRECT: To “cook” the cancer. Heat treatment. When you get in a machine to see if anything has spread. Another version of chemotherapy.
“I was surprised that a one-minute video could actually help people understand these complex terms,” Pentz says. “My panel came up with short, nifty definitions that could capture the heart of these topics with just a few words.”
The six videos used in the study, as well as videos explaining the rest of the 20 commonly misunderstood terms, are available online at Cancer Quest, an Emory University website that provides education for cancer patients. Pentz hopes that as many patients as possible—as well as their caregivers—will view these videos, improving patient literacy and care one word at a time.
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