Understanding Patient and Caregiver Concerns During First-Line CLL Treatment Decisions

Choosing a first-line treatment for chronic lymphocytic leukemia (CLL) is one of the most important decisions a patient and their care team will make—but it’s also one of the most emotionally and logistically complex. With several therapeutic options available, including both fixed-duration and continuous oral regimens, there’s often no single “right” answer. Instead, treatment selection is determined based on multiple clinical, personal, and logistical factors that are deeply individual.

Despite the best intentions of their providers, patients and caregivers often report feeling uncertain, unsupported, or overwhelmed during this important part of the patient journey. Findings from a 2022 Association of Cancer Care Centers (ACCC) survey illuminate several disconnects that often exist between patient and provider perceptions, revealing opportunities to improve communication, education, and shared decision-making in CLL care.

Feeling Underinformed Despite Provider Efforts

In 2022, ACCC conducted a paired survey of patients with CLL and oncology care providers to better understand the treatment decision-making experience. While providers largely reported that they offer comprehensive education about treatment options, nearly half of patients said they left their initial conversations with unanswered questions. Only 54% of patients felt their questions were fully addressed when discussing their diagnosis and treatment plan.

This disconnect likely does not reflect a lack of provider effort, but rather a disconnect between what is said and what patients comprehend in a moment often defined by shock, fear, or information overload. It also speaks to the need for layered, patient-centered communication strategies—approaches that extend beyond verbal explanations to include visual aids, take-home materials, and structured opportunities for follow-up questions. Reinforcing key information through multiple touchpoints and voices across the care team can also help ensure that the most important information is understood and retained.

Differing Priorities in Treatment Decision-Making

Another important disconnect emerged around what matters most during treatment selection. The survey revealed that both patients and providers agree on the importance of efficacy, but their secondary priorities diverged. Patients valued fixed treatment duration and the convenience of where and how treatment is delivered—preferences that speak to quality of life and a desire for predictability. In contrast, providers emphasized the cost of treatment and the severity of potential adverse effects.

While these are all clinically and systemically important considerations, the difference in focus highlights the importance of making space for patients to voice their individual preferences and goals during shared decision-making conversations.

Psychosocial Support Referrals Often Get Lost in Translation

The survey also revealed striking gaps pertaining to the delivery of supportive care referrals. While more than half of providers indicated they refer patients to support groups or psychosocial resources, 95% of patients reported that they never received these referrals. Similarly, nearly 85% of patients said they did not receive printed or digital materials about their disease, even though providers indicated these materials were routinely shared.

This suggests that vital resources may be offered too briefly, inconsistently, or at times when patients are too overwhelmed to absorb or retain the information. For caregivers—who often shoulder much of the emotional and logistical burden—this perceived lack of structured support can be especially difficult.

Emotional Toll on Patients and Caregivers

These findings align with what organizations like The Leukemia & Lymphoma Society, now Blood Cancer United, hear regularly. Kristina Lopez, LCSW, a clinical social worker at Blood Cancer United who supports patients and caregivers through her role as an information specialist, notes that the diagnosis and treatment experience is often described as an “emotional rollercoaster.”

Providers commonly refer to CLL as a “good cancer” that patients are more likely to die with than to die of, since CLL is a chronic condition that is often managed for many years. While this is meant to be reassuring, it can be overwhelming for a patient to hear that their cancer will not be cured and must be managed continuously over their lifetime. “It’s important [that] providers equally reassure patients that CLL is very manageable while still validating the real emotional and psychological distress that a person experiences when they are told they have a cancer,” Lopez says.

She also emphasizes the importance of supporting caregivers, who are often expected to be a strong, positive presence in the patient’s life. In an effort to meet the needs of the patient, the caregiver’s needs may be neglected. Lopez recommends involving the support team, including navigators and social workers, early and often to assess the emotional coping skills of both the patient and caregiver.

Moving Toward More Patient-Centered Care

As part of its CLL care delivery initiative, ACCC is developing tools and resources that aim to bridge these gaps—focusing on practical strategies to embed shared decision-making and structured support into routine care. These resources include patient-friendly discussion guides, communication tips for clinicians, and workflow suggestions to ensure that supportive care services are not only offered, but are delivered in ways that are timely, accessible, and well-received. Blood Cancer United also offers a comprehensive suite of support services, including disease education, financial assistance, and psychosocial support tailored to the needs of patients and caregivers.

Improving the CLL treatment experience goes beyond providing effective therapies—it means ensuring that patients and caregivers are informed, supported, and aligned with their care team from the start. By personalizing education, integrating routine referrals to supportive services, and engaging caregivers as active participants, the cancer care community can better meet the holistic needs of those navigating CLL. In doing so, we move closer to a truly patient-centered model of care—one in which confidence and clarity guide every treatment decision.

Resources

• ACCC Chronic Lymphocytic Leukemia (CLL) Resources
• Chronic Lymphocytic Leukemia (CLL) Treatment Strategies, Sequencing, and Care Optimization Webinar Series
• ACCCBuzz Blog: Guiding Principles for Effective Management for CLL
• The Leukemia and Lymphoma Society (now Blood Cancer United) Information Resource Center