Chronic lymphocytic leukemia is a cancer of the B-lymphocytes that may be found in bone marrow, blood, lymph nodes, the spleen, and other organs. Chronic lymphocytic leukemia is the most common form of leukemia in adults and accounts for one quarter of new leukemia cases annually. The average age at diagnosis is 70, and chronic lymphocytic leukemia is rarely seen in those under the age of 40. Considered a chronic disease, as it can persist for a long time and often reoccurs over the lifetime of the patient, chronic lymphocytic leukemia is less common than other types of cancers, accounting for just 1.2 percent of all cancers. In 2022, the American Cancer Society estimates that the U.S. will see about 20,160 new chronic lymphocytic leukemia cases.
ACCC is committed to ensuring that every patient with chronic lymphocytic leukemia receives equitable access to care. To help achieve this goal, ACCC has launched a new project focused on identifying and addressing state- and region-specific disparities in chronic lymphocytic leukemia care.
Chronic lymphocytic leukemia is a type of cancer that originates in the white blood cells found in bone marrow. It is the most common type of leukemia diagnosed in adults in the U.S., accounting for 25 to 30 percent of all new leukemia cases. This cancer affects mostly older adults; a patient’s average age at diagnosis is 70.
In 2020, ACCC developed a heat map showing the incidence rate and physical location of chronic lymphocytic leukemia diagnoses across the country. Another map indicating the locations of chronic lymphocytic leukemia expert providers was placed over the heat map, revealing the areas in the U.S. most in need of expertise.
Building on these maps, the latest ACCC project aims to identify, understand, and address specific state and regional challenges to accessing appropriate and equitable care for patients with chronic lymphocytic leukemia. Using a variety of data sources, ACCC’s resources will identify disparities in care and use that information to initiate conversations with providers in specific areas about how to improve care for underserved populations. This project will also highlight effective community outreach strategies that can be adopted by cancer centers across the U.S. to target at-risk populations.
View Heat Maps
This project is made possible by support from AstraZeneca, Janssen Oncology, and Pharmacyclics.
Treatment of patients with chronic lymphocytic leukemia (CLL)—the most common form of leukemia found in adults in Western countries—has undergone a dramatic transformation with the approval of multiple novel oral oncolytics. Oral oncolytic treatment represents a new wave of intervention by providing patients with cancer the means to self-administer medications at home, allowing patients a degree of control over their treatment experience while also reducing clinical visit commutes which, in turn, grant precious time to oncology nurses to focus on other clinical duties.
With the introduction of oral agents, cancer care teams face new challenges (e.g., medication adherence, prescription interactions, toxicity management) in ensuring high-quality care for patients with cancer. The significant variations in oral oncolytic treatments in patients with chronic lymphocytic leukemia has experts urging clinicians to extend the quality and safety agenda from parenteral to oral oncolytics.
Through the Steps to Success: Integrating Oral Oncolytics into Chronic Lymphocytic Leukemia (CLL) Practice project, the Association of Community Cancer Centers (ACCC) will:
ACCC’s Effective Practice Guide highlights case studies profiling effective practices in the integration of oral oncolytics into the cancer continuum. The case studies outline key roles, address specific challenges, and discuss current solutions and plans for oral oncolytic integration. The guide also provides practical tools for program development and features an Oral Oncolytic Clinical Workflow for the treatment of Chronic Lymphocytic Leukemia. Improve patient outcomes and streamline integration with our comprehensive guide.
Learn about a nurse’s role in care planning, and engaging patients in education, and shared decision making for treatment goals and planning.
Oral oncolytic treatment represents a new wave of intervention by providing patients with CLL the means to self-administer medications at home, allowing patients a degree of control over their treatment.
Monitoring a patient’s measurable residual disease (MRD) at various points throughout active treatment and into remission provides important personalized insights into the effectiveness of a given therapy and may be used to predict which patients are at risk of relapse. Testing for MRD can shape treatment choices and overall patient management to achieve better outcomes.
The Association of Community Cancer Centers (ACCC) is hosting a webinar with faculty who are experts in the field of hematologic malignancies.
This webinar will provide the multidisciplinary cancer team with important and practical information for the assessment of measurable residual disease (MRD) as part of routine clinical practice for their patients with chronic lymphocytic leukemia (CLL).
The presentation will be valuable for understanding the impact of MRD on treatment decisions and practice patterns, which has promise to lead to major improvements in outcomes for CLL patients in the very near future.
Register for this Webinar
This project is supported by Adaptive Biotechnologies.
Chronic lymphocytic leukemia is often slow to grow or indolent and symptomless. It is typically found accidentally during routine blood tests. Depending on the factors involved, many patients are put on a "watch and wait" treatment approach and are monitored by their hematologist/oncologist and primary care provider until symptoms become significant and require treatment. Many clinical trials are exploring the efficacy of starting treatment before symptoms present.
ACCC offers a portfolio of practical resources for multidisciplinary care teams to explore and consider implementing.
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While treatment options have improved outcomes for patients with CLL, it is important to consider other aspects of the patient journey to gain insight as to how providers may better understand and serve their patients. ACCC conducted an educational initiative focused on gaining insights into the journey of patients with CLL by exploring conversations and perceptions of patients and providers across a broad spectrum of issues, including knowledge sharing and support on diagnosis and treatment, the use of telehealth, biomarkers, the impact of the COVID-19 pandemic on disease management, and quality of life (QOL).
Three ACCC Cancer Program Members were selected to participate in custom-tailored quality improvement workshops. This publication highlights the quality improvement projects the participating ACCC Cancer Program Members developed as a result of the workshops. Learn about the various efforts of each site to improve care for patients with CLL in their respective settings—and during the COVID-19 pandemic.
Thank you to the following ACCC Cancer Program Member sites for their participation:
Chronic lymphocytic leukemia (CLL) is a heterogeneous disease, and a number of factors affect patients’ treatment options including age, overall health, whether the disease is high-risk for progression, and what symptom is being treated and why. This publication presents highlights of the current CLL treatment landscape and includes examples of effective delivery of patient-focused multidisciplinary care for patients with CLL across different care settings.
ACCC thanks the following Cancer Program Members for their contributions to this publication:
CAR Therapy for Solid Tumors Draws Attention at Annual Cancer Conference
CURE, June 18, 2019
Multidisciplinary project aims to educate physicians, patients about best practices in CLL care
Healio.com, June 09, 2019
This project is supported by Pharmacyclics and Janssen Oncology.
The COVID-19 pandemic has led to sharp declines in cancer screenings and diagnoses across the board, and it has interrupted the ongoing treatment and monitoring of many existing patients. Indeed, cancer diagnoses are down remarkably, but not because of less prevalence. Many patients—particularly the elderly and other groups at high risk for complications due to COVID-19—have chosen not to actively engage with their healthcare providers during this time.
Traditional treatment approaches to chronic lymphocytic leukemia (CLL) have made treating this disease particularly compromised by the restrictions brought on by COVID-19. Given that CLL can spread very slowly, asymptomatic patients diagnosed with it are often monitored over time (also called “watchful waiting”). The long duration of the pandemic has led many patients to continually postpone regular office appointments, potentially contributing to unmonitored disease. And given that CLL mostly affects older people, they may be even less likely to keep office appointments during a pandemic. Many fear that when most patients begin to feel safe enough to access regular in-person care, practices may be deluged with patients with advanced disease requiring immediate treatment.
To help cancer practices prepare for an expected increase in undiagnosed patients and a surge in upstaged patients, this project aims to teach care team members short- and long-term solutions to operational challenges as the pandemic recedes, paying special attention to traditionally underserved patient populations. The Association of Community Cancer Centers will reach out to its members with webinars, podcasts, tools, publications, and case studies to share lessons learned from practices that have succeeded in maintaining their services to at-risk patient populations during a time of national crisis.
The pandemic has heightened the distress patients with CLL face and taken its toll on providers. Learn strategies and solutions to these challenges and the path forward for providing patient care.
Hear considerations for treating patients with CLL during the pandemic, including best options, treatment timing, changes to the usual regimen, and how to prepare for the future.
Hear vaccine guidance for patients with cancer and National Comprehensive Cancer Network guidelines for COVID-19 vaccines, in addition to new treatment and prevention options.
In 2021, ACCC interviewed six members of the multidisciplinary cancer care team to discuss how their organizations are handling the challenge of treating patients with CLL during this pandemic. Read about their different approaches to providing quality care during a very challenging time.
In this episode, we'll hear how patients with blood cancer are joining the LLS National Patient Registry to increase scientific knowledge about COVID-19 vaccination and booster shot efficacy.
As the COVID-19 pandemic recedes and restrictions loosens for most of the U.S., we'll discuss how patient education has become even more critical during this transition.
Treating CLL in the Age of COVID-19
Targeted Oncology, Dec 13, 2021
Funding & support provided by AbbVie.
For more information on any of these projects, please contact the ACCC Provider Education department.