Understanding the Language of Cancer

Cancer terms not well understood by lay audience

(RxWiki News) Imagine this scenario. You’ve just had a colon cancer screening and your doctor tells you, “We’ve found a few pre-malignant neoplasms that may develop into adenocarcinoma.”

Would you know what you were just told? Probably not.

Understanding what your doctor says is critically important so you can ask the right questions and be fully involved in making decisions about your care.

A new study looked at how well lay people understand cancer terms and how language can influence doctor-patient conversations.

"Keep asking, “What does that mean?” until you understand."

Steven Libutti, MD, FACS, vice chairman of surgery and director of the Montefiore Einstein Center for Cancer Care in Bronx, NY, has spoken with hundreds of cancer patients. He told dailyRx News, “Often, we as cancer clinicians converse in our own language – a language made up of terms and terminology not always easily understood by a lay audience and certainly not always understood by patients.”

To address this situation, researchers, led by Arwen H. Pieterse, PhD, of Leiden University Medical Centre in the Netherlands, looked at how well oncologists communicated with potential patients, based on a number of factors.

The study had three goals: 1) extend the authors’ previous work on lay understanding of terms relating to cancer diagnosis, prognosis (outlook) and treatment; 2) measure effectiveness of jargon versus plain language; and 3) examine the impact of patients' self-confidence on understanding cancer scenarios.

For this study, 194 people completed questionnaires that measured their understanding, confidence in understanding and worry after reading 10 scenarios presenting cancer-related terms.

The researchers also measured communication and decision-making effectiveness, along with patient trust following a vignette in which an oncologist used jargon or plain language.

The study found that participants understood about seven of the 10 cancer terms, but only just over 2 percent of the individuals understood all 10 terms.

Individuals who correctly understood the scenarios had higher confidence in appreciating the gravity of what was being discussed. This confidence resulted in worry levels that better matched the situation.

Language complexity (jargon versus plain language) didn’t affect perceived communication effectiveness or trust. 

Participants who felt confident that they understood everything thought the conversations were more productive.

“I think it is critically important that we make a concerted effort to explain things as clearly as possible especially as they relate to diagnosis, prognosis and care decisions,” said Dr. Libutti, who was not involved in the study.

He continued, “I have found it useful to ask my patients to explain back to me what their understanding of our discussion was. In this way, I can better gauge how well we are communicating and how well I am doing at explaining things.”

The study authors concluded that oncologists need to do more of what Dr. Libutti does – making sure that patients fully understand what’s happening in their bodies so that they can fully engage in making decisions.

This study was published in the May issue of Psycho-Oncology.

No outside funding was disclosed. Two of the authors had postdoctoral fellowships from the Dutch Cancer Society at the time of the study.

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Review Date: 
May 17, 2013