New Insights from groundbreaking results from the latest Emotional Impact Report (EIR), a patient survey that provides an understanding of the mental health impacts of chronic lymphocytic leukemia (CLL) diagnosis, shows that Black, Hispanic, and Asian patients have more negative emotional experiences and outlooks with their chronic lymphocytic leukemia (CLL) diagnosis and treatment journeys.
CLL is one of the most common leukemias among adults affecting more than 200,000 people in the U.S.[1][2] The disease can develop from cells in the bone marrow that later mature into certain white blood cells (called lymphocytes).[1]
While these cancer cells start in the bone marrow, they later spread into the blood. In 2021, there were approximately 215,107 people with CLL living in the United States with more than 20,000 new cases expected in 2024.[2] CLL is more common in older Caucasian males with a median age at diagnosis of 65 to 74 years and only 11-13% of known cases reported in non-Caucasian populations.[3][4]
Emotional Impact Survey
The survey, sponsored by AbbVie and developed in consultation with Trinity Life Sciences, enrolled 232 participants in a 20-minute self-administered online survey. Participants represented an ethnically diverse section of demographics and socio-economic statuses and provided a comprehensive view of the CLL population, including Caucasian (n = 131), Black (n = 37), Hispanic/Latinx (n = 32), Asian (n = 31), or other (n = 3*). All surveys were completed between July 8, 2024, and October 4, 2024.
The findings from the survey are the first to report the emotional perspectives of Hispanic, Black, and Asian patients with CLL and their unique experiences and challenges throughout their blood cancer journey, and were shared during an ancillary event at the 66th American Society of Hematology (ASH) Annual Meeting and Exposition, held in December 7-10, 2024, in San Diego, California, and online.
“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,” explained Andy Souers, Ph.D., vice president, Oncology Discovery Research, AbbVie.
“To fix the challenges, you must first illuminate them. We are committed to working with the community to gain a better understanding and meet the needs of all patients with CLL.”
“As someone who has spent their entire career working to educate and inspire Black Americans to make better health decisions, I see AbbVie’s Emotional Impact Report as a step in the right direction to highlight the specific emotional challenges experienced by minorities impacted by blood cancer,” said Reggie Ware, CEO of BlackDoctor.org and speaker at AbbVie’s panel event.
“Collecting representative insights helps ensure that all voices are heard, and all experiences are acknowledged.”
How does Culture Impact the CLL Journey
Cultural norms and beliefs often play a part in a patient’s experience with CLL. Among ethnically diverse patients surveyed, many strongly feel the need for educational and emotional support resources tailored to their cultural beliefs (45% Asian; 38% Hispanic; and 24% Black) compared to only 2% of Caucasian respondents.
Additionally, more than a third of ethnically diverse patients are more comfortable interacting with HCPs who share their race/ethnicity. Findings also show that ethnically diverse patients are underutilizing online support groups, with very few reporting using this resource to learn about CLL (19% Hispanic; 23% Asian; and 35% Black).
Emotions and Worries
When diagnosed with a slow-growing blood cancer like CLL, patients surveyed indicate challenges in coping with their emotional reactions and dealing with the reactions of their family members.
Specifically, when asked about their emotions at the time of diagnosis, both Black/Hispanic/Asian and Caucasian patient groups felt fear (67% and 90%, respectively) and surprise (56% and 71%, respectively) as their predominant feelings.
Hispanic patients in particular report that substantial hardships weigh heavily on them once diagnosed, including uncertainty about the next steps (72%), with over 30% of all Hispanic respondents considering it a challenge to feel listened to when describing their symptoms.
Ethnically diverse patients also have more concerns about financial challenges due to medical expenses (35% Black; 39% Asian; and 53% Hispanic) compared to Caucasian respondents (18%).
A Disconnect between Patients and Physicians
Effective communication with healthcare professionals (HCPs) is crucial for managing CLL. However, less than half of patients across all groups surveyed feel supported by their doctors in managing the emotional impact of their disease (29% Asian; 30% Black; 33% Caucasian; and 38% Hispanic).
Among ethnically diverse patients, 30% desire more time during check-ins to discuss their emotional and mental health. And, when it comes to setting their treatment goals, only half of Black patients feel they collaborate effectively with their HCPs, with Hispanic and Asian patients at 38% and 35%, respectively.
On an overall level, on-treatment patients have a less positive perception of their treatment experience compared to off-treatment patients.
“Having someone to talk to about their treatment goals and emotional needs is crucial for patients with CLL,” explained Brian Koffman, M.D., Chief Medical Officer of the CLL Society, who also spoke at the recent panel event.
“It provides them with a sense of support and understanding, which is vital in helping them navigate the emotional complexities of their diagnosis and treatment. Knowing they are not alone can help empower them to face their journey with greater resilience and hope,” Koffman added.
AbbVie will continue to work with patient advocacy stakeholders to develop actionable solutions that address the unmet needs uncovered in the 2024 Emotional Impact Report survey. By collaborating with advocacy groups, AbbVie aims to keep emotional health at the forefront of the CLL care conversation so that all patients can receive the personalized support they need and deserve for their overall well-being.
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Note: * Other refers to American Indian/Alaska Native (n = 2) and Native Hawaiian/Other Pacific Islander (n = 1)
References
[1] American Cancer Society. Leukemia – Chronic Lymphocytic Leukemia. Online. Last accessed in December 2024. Accessed December 2024.
[2] National Cancer Institute. Cancer Stat Facts: Leukemia — Chronic Lymphocytic Leukemia (CLL). Online. Last accessed in December 2024.
[3] Shanafelt TD, Rabe KG, Kay NE, Zent CS, Jelinek DF, Reinalda MS, Schwager SM, Bowen DA, Slager SL, Hanson CA, Call TG. Age at diagnosis and the utility of prognostic testing in patients with chronic lymphocytic leukemia. Cancer. 2010 Oct 15;116(20):4777-87. doi: 10.1002/cncr.25292. PMID: 20578179; PMCID: PMC3902481.
[4] Vardell VA, Ermann DA, Fitzgerald LA, Shah HR, Hu B, Stephens DM. Influence of racial and ethnic identity on overall survival in patients with chronic lymphocytic leukemia. Am J Hematol. 2023 Jul;98(7):E172-E174. doi: 10.1002/ajh.26937. Epub 2023 Apr 20. PMID: 37078687.
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