Study assesses adherence to ASCO Language of Respect guidelines in prostate cancer abstracts

In an effort to promote the use of respectful language toward patients with cancer in publications and presentations, ASCO created the Language of Respect (LoR) guidelines in 2020. To gauge the impact of the guidelines a recent study assessed adherence to them in abstracts related to prostate cancer presented at the 2023 ASCO Annual Meeting.¹

Regina Barragan-Carrillo, MD

The study findings were shared this year at 2024 ASCO Genitourinary Cancers Symposium by Regina Barragan-Carrillo, MD. She was 1 of 6 reviewers who screened the prostate cancer abstracts and examined each statement related to diagnosis, treatment, and clinical outcome. They classified these statements according to how well they adhered to the LoR's three core principles:

1. Do not blame patients.
2. Respect the role of the patient.
3. Do not dehumanize patients.

The study found that while the guidelines exist, over 60% of the analyzed abstracts contained language that did not follow them. According to Barragan-Carrillo, medical oncologist, postdoctoral fellow, Department of Medical Oncology and Therapeutics Research, City of Hope Comprehensive Cancer Center, the most common issue was dehumanizing language (49%) used to describe patients, followed by placing blame on them for their condition or outcomes (17%).

Notably, the only factor to be linked with increased use of non-respectful language was having the first author affiliated with a non-English speaking institution. This finding suggests a potential need for broader translation and awareness of the guidelines.

In an interview with our sister site, Targeted Oncology, Barragan-Carrillo further discussed the rationale behind this research and what these findings mean for the field of oncology moving forward.

What specifically motivated you to investigate the adherence to these guidelines?

When you look at patient satisfaction and think about patient care, doctors and patients [typically] don’t see the same importance in depth. For example, the main reason for our complaint coming from the patient is usually language-related. That is quite important from the clinical side for a medical oncologist to actually address. The history behind these guidelines is super interesting. Dr. Narjust Florez from Dana-Farber Cancer Institute and Dr. Tatiana Prowell from the FDA developed these guidelines back in 2020 because the way we were addressing our peers during meetings and also the way we were addressing patients in the scientific communication was definitely not the best way we could do it.

They developed these guidelines [and] we are addressing how we talk about patients in scientific communication. We have had 3 years since the publication of these guidelines, and we were curious to know whether some medical communities have adopted them and made an impact on how we write in our own communications.

What methodology did you use to analyze these abstracts?

We first collected all the abstracts that were presented at the 2023 ASCO Annual Meeting regarding prostate cancer. We collected data, a little over 200 of them, and then sentence by sentence, we classified whether these abstracts were adhering to the recommendations from the language of respect guidelines. We have 3 main principles in these guidelines. The first one is not to dehumanize the patient. For example, more often than not, we see that instead of saying ‘patients with prostate cancer’, we might say ‘prostate cancer patients.’ Of course, we understand that there are some limitations in the way we write, but nonetheless, that is a way of dehumanizing the individual. The other 2 we follow are that we do not blame the patient, for example, we do not say ‘patients who fail treatment,’ because the thing that is failing the patient is the treatment. Finally, the respect for the role of the patient. We might see, for example, doctors ‘managed’ X number of patients, instead of saying ‘treated,’ because that is what we do in the medical profession. We were doing this sentence by sentence, determining whether they would adhere to the guidelines.

Afterwards, we did a univariate and multivariate analysis to determine whether there were any specific associations between general characteristics from the other things, for example, whether they were coming from a native English-speaking institution, whether they were coming from a single country, multiple countries, institution, multiple institutions, and we classified, which was the principle that was not followed. Overall, we took these 3 different principles, classified them, and determined which [factors associated with non-compliance with guidelines].

What were the most common types of non-adherences identified?

The most frequent that was not adhered to was the one regarding the dehumanizing patients. I think this expression of the breast cancer patients, prostate cancer patients, we have seen it a million times in our survey, in manuscripts, even during presentations, but that was the first. The second was the one regarding not blaming the patients. For example, this statement about patients failing treatment, patients not being adherent with treatment when there is complexity behind that.

What factors might contribute to the nonadherence to these guidelines?

This is quite complicated to explain and to analyze because there are several things that we do not have the ability to take into account. For example, we looked at where the institution was based, but we didn't look for whether the operators of the manuscript are a native English speakers or not. Also, we might believe that a certain proportion of doctors might be more sensitized to the topic than another generation of doctors. At least in our multivariate analysis, the factor that was associated with a higher-risk for nonadherence was coming from an institution that was not based in an English-speaking country. In that group, we included the United States, Australia, New Zealand, and the United Kingdom.

Were there any particularly notable findings or anything that surprised you?

There were some surprising findings. When we see 100% of the abstracts submitted, we notice that over 60% have at least 1 statement that did not adhere to the guidelines. I think talking about more than half of the abstracts being submitted not having these principles being followed is definitely something that we must actively address between our colleagues. Also the fact that the factor that was statistically associated with a higher-risk for nonadherence, being institutions that are not native English speakers, also addresses the fact of the importance to translate and to make these guidelines worldwide available and not only an initiative we have, through the American association, but also trying to find ways to put them out there for people who are from medical teams coming from Europe, Latin America, Asia, etc. I think those would be my main 2 findings in this work.

What recommendations do you have for improving adherence to the guidelines in the future?

I think it's quite spot on. Probably being open about the fact that we are not following them would be the first step. When we know the areas of unmet need, that is the first step we have to address them. Second is to have them readily available, not only for the ASCO Annual Meeting, but also for other meetings like ASTRO, AACR. I think that is step number 2 that will be taken into account.

Reference

1. Barragan-Carrillo R, Wong MH, Dizman N, et al. Adherence to American Society of Clinical Oncology (ASCO) language of respect (LoR) guidelines in ASCO Annual Meeting prostate cancer (PCa) abstracts. J Clin Oncol. 2024;42(suppl 4):94. doi:10.1200/JCO.2024.42.4_suppl.94