RCC Abstracts Show Gaps in ASCO’s Language of Respect Guidelines

At the 2024 American Society of Clinical Oncology (ASCO) Genitourinary Annual Meeting, Nazli Dizman, MD, and colleagues presented research on the adherence to ASCO’s language of respect guidelines in abstracts related to renal cell carcinoma (RCC). These guidelines, developed before the 2020 ASCO Annual Meeting, aim to ensure that communications about patients are respectful, emphasizing the need to avoid blaming, dehumanizing, or undermining the role of the patient.

The study evaluated 184 abstracts presented at the 2023 ASCO Annual Meeting, revealing that 42.4% of them violated the “do not dehumanize the patient” clause, while 18.5% contained language that could be seen as blaming the patient, and 2.2% failed to respect the role of the patient. These findings indicate a need for greater awareness and adherence to the language of respect guidelines in oncology communications.

Dizman, a hematology/oncology fellow at MD Anderson Cancer Center, explained that while these guidelines are critical for making patients feel comfortable and respected, enforcement and accountability remain a challenge. She suggested that incorporating stronger educational efforts and regular audits could help improve compliance.

Additionally, she advocated for the broader adoption of respectful language standards across all oncological specialties to ensure that patients are consistently represented with dignity in scientific discourse.

“The guidelines are very well written, detailed with examples, and not available on the website of ASCO. I think as a guideline, they are sufficient, but I do think that we need to raise more awareness about their existence and how we should be cognizant about really prioritizing the patient-centered approach,” Dizman said in an interview with Targeted OncologyTM.

In the interview, Dizman discussed the current measures for enforcing these guidelines in the RCC space.

Targeted Oncology: What drew you to investigate the adherence of ASCO’s language of respect guidelines in RCC abstracts?

Dizman: I am proud of the team we built to work on these abstracts, focusing on language of respect and what we put out. I am really hoping we will see these as papers in the future. In terms of the idea behind this research question, years ago, I recall a tweet mentioning that a new drug was a "game changer," and a patient responded, "It is not a game for me." I remember how shocked I was, and it was an enlightening moment to understand that our communications need to center on respecting patients.

Later, during my residency, we had several meetings about using respectful language in our notes when writing in the charts of the patients. Although these discussions were not specifically about oncology, they focused on things like avoiding terms such as “diabetic patient” and instead saying “patient with diabetes,” or not saying a patient “used to be a drug addict” but rather that they had a "past medical history of substance use disorder." The idea was to avoid singling out or blaming anyone.

As time passed, we were thinking about projects to do with our junior team in Dr. Sumanta K. Pal’s, MD, FASCO, group. We came up with this idea because ASCO had published language of respect guidelines a few years ago, giving examples and detailing their recommended approach. Our experience suggested that practice was not fully aligned with these guidelines, so we wanted to objectively assess whether these guidelines are being used in abstracts at ASCO. That is how the project started.

Kidney cancer, colorful medically 3D illustration: © Axel Kock - stock.adobe.com

Can you elaborate on some of the examples of language considered respectful and disrespectful, specifically in the context of RCC?

A few points mentioned in the guidelines focus on not blaming the patient. We do not want to make them feel responsible for the medication or treatment they are receiving. A common trend in papers is to write something like "30% of patients achieved an objective response" or to use a phrase like "10% failed drug therapy." These types of statements put blame on the patient, and we saw many examples of this in our review.

Another important point is that a disease should not be used as an adjective for the patient. For example, just as we avoid saying "diabetics" and instead say "patients with diabetes," we should avoid terms like "PD–L1-positive patients" or "EGFR mutants." Instead, we should say "patients with EGFR-mutated tumors" or "patients with PD–L1-positive tumors" or "PD–L1-positive disease." There are various ways to express this while avoiding language that blames or disrespects patients in our communications that are publicly available.

In your analysis, what were some of the most common instances of nonadherence to the guidelines?

We evaluated all the RCC abstracts based on the 3 main clauses of the language of respect guidelines. The most commonly violated clause was the respect for the role of the patient. These are the statements that use a patient's disease as an adjective, like metastatic patients or cancer patients, statements like that.

The second most commonly violated clause was the do not blame patient clause: [language like] “patient achieved,” “patient failed treatment,” or grouping patients based on their response to therapy, for example, responders or nonresponders.

And the third common clause was the do not dehumanize patient clause that we assessed and in that, I think around two-thirds of the abstracts had at least 1 statement against this. This clause would include examples like PD–L1-positive patients or metastatic patients.

What potential impact could the use of disrespectful language have on patients with RCC?

The essence of our jobs as oncology providers is to really team up with our patients to help them go through these challenging situations. For oncologists, there are several ups and downs, and effective communication skills are very important. Patients would want to hear genuine advice that does not blame them or does not count them responsible for anything happening. This will be one of the most valuable things that the patients prioritize. If we do this well, we know that they thank us for doing that. Most of us would potentially achieve effective rapport with the patient after spending time in several visits, but it is challenging to do that on the podium or do that while writing papers.

I think there is still room for improvement in the language we use in communications and in our presentations or our manuscripts or abstracts. I think our reports in kidney cancer, and we have 2 other reports, 1 in bladder cancer and 1 in prostate cancer, they all highlight the importance of building these skills. I think awareness and adherence to patient-respectful language is a good step to help build that rapport for patients we are not seeing personally, and for the broader community of oncology, especially while they are going through challenging times.

Do you think the current accountability measures for enforcing the language of respect guidelines are sufficient? If not, what suggestions do you have for improvement?

The guidelines are very well written, detailed with examples, and not available on the ASCO website. I think as a guideline, they are sufficient, but I do think that we need to raise more awareness about their existence and how we should be cognizant about really prioritizing the patient-centered approach. I do believe that those are small steps that could easily be taken and be fixed by just paying attention. So, I am hoping that we could raise awareness for people to read through the guidelines and pay attention in the future.

How do you envision the continued promotion and implementation of respectful language and oncology research and communication?

We could see more guidelines from other institutions or societies, highlighting the importance of language of respect. Perhaps journal submissions could also include a few sentences prioritizing this respect of language. Aside from just in written communications, I think on the podiums in conference presentations, ensuring the review of the material that is going to be presented from this standpoint would also be helpful.

REFERENCE:

Dizman N, Castro DV, Mercier BD, et al. From guidelines to accountability: Examining adherence to ASCO Language of Respect in renal cell carcinoma (RCC) abstracts. J Clin Oncol. 2024;42(suppl 4):396. doi:10.1200/JCO.2024.42.4_suppl.396