JUN 03, 2019 3:42 PM PDT

Making Cancer Language Patient-Friendly: A Multisector Call to Action

WRITTEN BY: Julia Travers

A May 2019 article in The Oncologist calls on members of the medical community to cooperatively create a resource of patient-friendly language for people navigating cancer treatment. The authors hail from various oncology-related offices of the U.S. Food and Drug Administration (FDA), and they recommend a multisector approach to help patients better understand essential oncology terminology in relation to treatment and trial decisions.

“We have increasingly learned from patient engagement and [FDA] public workshops that many patients have difficulty understanding trial terminology intended to convey a treatment’s benefit and the harms that may be associated with its use,” the authors write.

Patient with doctor illustration, credit: public domain

Progression-free survival, disease-free survival, overall survival and overall response rate are some of the concepts that may be under-explained or unclear to patients. The article proposes oncologists, members of the pharmaceutical industry, nurses, pharmacists, regulatory agencies, payers, health care providers and patient advocacy groups team up with patients to address this dilemma.

To tackle this problem, three general steps are suggested; the first is to work with patients and advocates to develop a better understanding of the issue and the content areas that are most in need of clarification. In the next stage, definitions of common terms could be “generated in an iterative dialogue” between patients and medical professionals.

The authors envision the development of an agreed-upon set of patient-friendly definitions, which could, in the third step of their suggested action plan, be communicated through multiple avenues, such as online resources, provider education campaigns and patient advocacy groups. For example, drawing on their interactions and conversations with patient groups so far, they came up with the following patient-friendly explanation of progression-free survival: “the median length of time after the start of this treatment that patients are alive while their cancer does not grow or spread.”

Patient with doctor, credit: public domain

The authors also point out that patient advocates are an increasingly vital resource for people with cancer, though many patients remain unaware of their existence. “This is especially true for medically underserved populations, including racial and ethnic minorities and individuals of lower socioeconomic status, as their ability to access health care is often more limited,” the authors state. Given this current imbalance, connecting more cancer patients to advocates will likely be an integral component of a successful patient-friendly language initiative.

About the Author
  • Julia Travers is a writer, artist and teacher. She frequently covers science, tech, conservation and the arts. She enjoys solutions journalism. Find more of her work at jtravers.journoportfolio.com.
You May Also Like
MAY 10, 2020
Genetics & Genomics
Towards a Targeted Elimination of Leukemic Cells
MAY 10, 2020
Towards a Targeted Elimination of Leukemic Cells
Our blood carries many types of critical cells, including platelets, red blood cells, and white blood cells, which are m ...
MAY 05, 2020
Cancer
Can a face-aging app improve sun protection behavior?
MAY 05, 2020
Can a face-aging app improve sun protection behavior?
Can a face-aging mobile app improve the skin cancer protection behavior of teenagers? A cluster-randomized clinical tria ...
MAY 18, 2020
Cancer
How do Ohnologs affect Cancer?
MAY 18, 2020
How do Ohnologs affect Cancer?
Genetics can be complicated to say the least. Sometimes it can be as simple as a single mutation in one gene that causes ...
MAY 17, 2020
Cancer
Text message reminders don't cut it
MAY 17, 2020
Text message reminders don't cut it
New research published in the Journal of Clinical Oncology shows that contrary to previous investigations’ results ...
MAY 25, 2020
Cancer
Using Transcription Factors to Predict Bladder Cancer Prognosis
MAY 25, 2020
Using Transcription Factors to Predict Bladder Cancer Prognosis
Bladder cancer is a rare form of cancer, with a relatively high recovery rate. Recurrence is still an issue; however, wi ...
JUL 04, 2020
Cancer
New mechanism that supports the progression and relapse cancer discovered
JUL 04, 2020
New mechanism that supports the progression and relapse cancer discovered
Researchers have found a mechanism of a key protein that supports the progression and relapse of cancer. This discovery ...
Loading Comments...