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.
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.”
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.