A new survey from AbbVie digs into the emotional experience of a chronic lymphocytic leukemia (CLL) diagnosis and, according to the company, is the first to break down the results by race/ethnicity to highlight the differing mental health impacts and desired support resources for patients of diverse backgrounds.
The survey spans just over 230 CLL patients in the U.S., grouped into four racial or ethnic cohorts: Black, Hispanic, Asian and white.
The core emotional responses to CLL diagnosis were fairly consistent across all groups, with a majority of all patients surveyed reporting fear as their initial reaction, followed by surprise, sadness and anger. Also common across all four cohorts was a shared feeling of not being supported by their doctors in managing the emotional impacts of CLL.
From there, however, many patients of color reported more negative experiences in their treatment journeys than white patients. For example, 40% of Hispanic patients and almost 30% of Black patients said their doctors spoke about their condition mostly to someone they’d brought with them to appointments, rather than to the patients themselves—compared to only 14% of Asian patients and 17% of white respondents who shared that experience. Hispanic patients in particular reported finding it challenging to feel listened to when describing symptoms, with nearly a third of the group agreeing with that sentiment.
The patients of color surveyed were also overwhelmingly more likely than their white counterparts to say they’d like access to more educational and emotional support resources specific to their culture and beliefs, and more than a third of the Black, Hispanic and Asian patients surveyed said they’d feel more comfortable working with healthcare providers who share their race or ethnicity.
Additionally, according to AbbVie, many patients of color are underutilizing available online support groups and educational resources pertaining to CLL—at an average of about 26% and 45%, respectively, across all three of the racial/ethnic groups. The survey results shared didn’t include the number of white patients using those resources for comparison.
This marks AbbVie’s second Emotional Impact Report. The first, which didn’t break down CLL patients by race or ethnicity, arrived in 2022 and highlighted the viewpoints of doctors and caregivers in addition to the patients themselves.
“Patients with CLL often grapple with the psychological burden of living with a slow-growing cancer, which can affect their mental health and overall well-being, regardless of their ethnic background. With the Emotional Impact Report, we wanted to lead the charge of looking at perspectives from underrepresented patients with CLL to better understand their unique needs,” Andy Souers, Ph.D., VP of oncology discovery research at AbbVie, said in a Sunday release unveiling this year’s survey results.
“To fix the challenges, you must first illuminate them,” Souers continued. “We are committed to working with the community to gain a better understanding and meet the needs of all patients with CLL.”
AbbVie’s support for the CLL diagnosis and treatment journey makes sense: It’s the maker of Imbruvica, a BTK inhibitor first approved by the FDA in 2013, and Venclexta, a BCL-2 inhibitor that earned its initial sign-off in 2016—both of which are popular treatments for CLL.