Comprehensive cancer care requires a common, simple language
Oncology has a language all its own — from the terms used to describe underlying disease biology to the phrasing of clinical trial results.
Clinicians go to school for years to learn and understand the terminology, but patients are often inundated with this esoteric language at a most inconvenient time, when their health is the primary concern. This can complicate the physician-patient relationship, because to fully participate in their own treatment process, patients and their loved ones must speak the same language as the clinicians responsible for their care.
With the emergence of targeted treatment options, patients may need to understand the oncology lexicon now more than ever to help make decisions about their care. Others might argue that it is the job of clinicians to present options in a more easily understandable manner for patients.
There is no arguing that the language of cancer care can be puzzling for patients, particularly when it pertains to various aspects of clinical trials.
A call to action
In a commentary published earlier this year in The Oncologist, a group of FDA officials called on members of the health care community — including oncologists, the pharmaceutical industry, patient advocacy groups, nurses and pharmacists — to develop a patient-friendly language for communication of clinical trial designs and results.
With the increase in treatment options comes a lack of resources to understand them, the group wrote.
“Patients are often left wondering where to start and where to go for understandable information, because medical terminology, specifically terminology surrounding cancer diagnosis and treatment, can be complex,” Janice Kim, PharmD, regulatory health project manager in the Office of Hematology and Oncology Products within the FDA’s Oncology Center of Excellence, and colleagues wrote.
The authors noted that the FDA has learned through public workshops that patients often have “difficulty understanding trial terminology intended to convey a treatment’s benefit and the harms that may be associated with its use.” Such terms include PFS, OS, DFS and overall response rate.
“These terms are ubiquitous in cancer drug development but are nuanced and can be associated with complicated clinical trial designs,” Kim and colleagues wrote.
“Given increasing time pressures in the clinic, it would be useful to clinicians and patients if a set of patient-friendly denitions could be generated for the most common drug development endpoints,” they added.
In a joint statement to HemOnc Today, Kim and co-author Paul G. Kluetz, MD, medical oncologist and deputy director in the FDA’s Oncology Center of Excellence, wrote that the goal of their commentary was to “articulate challenges in patients’ understanding of oncology language.”
“As this issue is brought to the forefront of the minds of clinicians and patients, we hope health care providers will have a readily accessible glossary of plain-language explanations for clinical trial jargon that is understandable to patients. With the help of various stakeholders, we aim to develop a potential solution for patients and clinicians in the form of a glossary of patient-friendly clinical trial terms,” they told HemOnc Today.
Kim and Kluetz acknowledged that most comprehensive cancer centers dedicate staff to patient education regarding treatment options and the terminology used in diagnosis and treatment. However, they hoped that by bringing relevant health care professionals together specifically to address clinical trial terminology, they can create an educational tool that will facilitate increased and accurate communication between patients and clinicians.
We hope clinicians will identify different methods to convey various aspects of a clinical trial, such as effectiveness, side effects and so on, in simple language where it will be more understandable so that patients can make informed decisions regarding their diagnosis,” they wrote.
“There are many emotions associated with a cancer diagnosis,” they added. “How a diagnosis and/or treatment is conveyed to the patient is significant. The language clinicians use ensures there is no misinterpretation regarding a patient’s diagnosis as well as their treatment options.”
Partners in care
The University of Utah’s Huntsman Cancer Institute has more than 140 staff members dedicated to working with patients participating in clinical trials. Among them are Sue Childress, RN, MN, OCN, and Donna Branson, BA, who between them have more than 60 years of cancer care experience.
Childress, outpatient director of nursing services at Huntsman Cancer Institute, said she routinely faces the issues raised by Kim, Kluetz and colleagues.
“I speak with patients all of the time, and they frequently express frustration with the language clinicians use regarding clinical trials,” she told HemOnc Today. “We frequently tell patients that if you don’t understand what your clinician or nurse is saying, please let us know.”
Although the individual terms in the clinical trial lexicon are far from complicated, when they are thrown together, “the meaning behind these words become murky for patients,” Childress said.
Branson, director of patient and public education at Huntsman Cancer Institute, provides patient education support through her office to the clinical trial team. The educational materials she and her office provide are written at an eighth-grade reading level to facilitate greater comprehension.
“We want to make sure that patients understand the terminology,” she told HemOnc Today.
“I’ve seen the negative effects when patients don’t understand, when taking medications, for example. The results can be disastrous.”
Branson also said that centers need to identify the specific needs of the communities they serve, which at Huntsman includes a large Spanish-speaking population.
“If your center has special needs like this, communication about care is critical,” Branson said. Staff must have resources available to ensure patients understand what medications to take when, and the need for routine follow-up and adherence to the treatment schedule.
“Patients need to understand the process they will go through, but they also need to feel that they are a part of their care team,” Branson said. “It’s our job to help facilitate their questions so they understand what’s going on. Oftentimes, patients don’t even know what questions to ask.”
Although she agreed with the challenges highlighted by Kim and colleagues in the commentary, Branson noted that resources already exist to educate patients and facilitate better understanding of clinical trial terminology.
“They talk about advocacy groups getting together to create a patient glossary of terms, but there are several glossaries already out there,” Branson said. “The NCI does a great job explaining in their glossary terms like progression-free survival, overall survival and disease-free survival.”
Other sources for patient-friendly language include the National Comprehensive Cancer Network guidelines on writing informed consent documents for patients, which has a glossary of more than 2,700 words related to clinical trials, Branson said.
Childress said Huntsman’s nurses provide follow-up education for patients after diagnosis and that the department run by Branson provides services for patients, staff and family members to enhance their understanding of cancer care and clinical trial terminology.
“We have what’s called our Cancer Learning Center — a physical library space where patients and their families can go to ask any questions they may have,” Branson said. “Oftentimes they bring literature or questions they have from the clinic, and we go over what they were told and make sure they understand it.”
Branson added that the learning center offers supplementary educational materials such as books and videos, for those who have an easier time learning through those resources.
“If you really want patients and families to be partners in care with the providers, they need to understand what’s being discussed and be able to make good decisions about their treatment plan,” Childress said. “They can’t be a good partner if they don’t really understand the plan and what their options are.” – by Drew Amorosi
NCCN Informed Consent Language (ICL) Database. Available at: www.nccn.org/clinical_trials/informed_consent.aspx. Accessed Oct. 28, 2019.
NCI Dictionaries. Available at: www.cancer.gov/publications/dictionaries. Accessed Oct. 28, 2019.
For more information:
Donna Branson, BA, can be reached at Huntsman Cancer Institute, 1950 Circle of Hope, N6040, Salt Lake City, UT 84112; email: firstname.lastname@example.org.
Sue Childress RN, MN, OCN, can be reached at Huntsman Cancer Institute, 1950 Circle of Hope, Salt Lake City, UT 84112; email: email@example.com.
Janice Kim, PharmD, can be reached at Office of Hematology and Oncology Products, 10903 New Hampshire Ave., White Oak Building 22, Room 2329, Silver Spring, MD 20903; email: firstname.lastname@example.org.
Paul G. Kluetz, MD, can be reached at Office of Hematology and Oncology Products, 10903 New Hampshire Ave., White Oak Building 22, Room 2223, Silver Spring, MD 20993; email: email@example.com.
Disclosures: Branson, Childress, Kim and Kluetz report no relevant financial disclosures.