Communicating with Patients While Navigating the New Landscape of Diffuse Large B-Cell Lymphoma (DLBCL)
Authors: Meier Lilly , Budde Elizabeth , Cherian Liffy Indu , Matasar Matthew , Mehta Amitkumar , Ghosh Nilanjan , Lile Ashley , Plotkin Elana , Colwell Nicole A , Kisiel Molly 
Published: December 2024

Background

Diffuse Large B-cell Lymphoma (DLBCL) is the most common and aggressive type of lymphoma. Despite its severity, it is widely considered curable, with 60-70% of patients achieving remission via first-line therapy (Vodicka 2022). This highlights the importance of providing patients with detailed information about their prognosis and setting realistic expectations regarding the potential need for additional lines of treatment.

Methods

In 2023, the Association of Cancer Care Centers (ACCC) conducted focus groups to explore ways to improve patient-provider conversations in cancer care. These groups included multidisciplinary care team members (n=4), patients (n=4), and patient advocates (n=2). Focus group sessions took place on 9/6/2024, 9/8/2024, and 9/12/2024. Focus group attendees were selected from an existing pool of lymphoma care team members and patients diagnosed with DLBCL.

Results

Suggested communication strategies at time of diagnosis include: Formally evaluate the patient's level of health literacy.Directly acknowledge the strong emotions that patients might experience.Explain the diagnosis, prognosis, and treatment options in detail according to the patient's preference.Use educational materials and share resources (eg, support groups).Inform patients that test results might appear on the patient portal before a provider discussion.

Patients reported experiencing confusion and frustration when receiving conflicting treatment recommendations. For instance, a patient was told by a radiation oncologist that radiotherapy would be beneficial, while their medical oncologist advised against it due to potential risks. Patients appreciated when providers: Explained that treatment plans could be adjusted if initial therapy was ineffective.Discussed additional options such as transplants, bispecific antibodies, or CAR T-cell therapy, which provided them with hope.

Participants recommended the following strategies for discussing treatment options: Ideally, the entire multidisciplinary treatment team should agree on a treatment plan before meeting with the patient. Regular in-person tumor board meetings or video conferences with medical and radiation oncology professionals can be helpful.Engage patients in shared decision-making and encourage them to articulate their treatment goals clearly while considering the risks and benefits.Be honest with patients about the physical and emotional challenges of the treatment journey. Advocacy groups like the Leukemia & Lymphoma Society (LLS) provide resources to help patients understand their options and find support.

Patients undergoing therapy often struggle with coordinating multiple appointments and traveling for care. To address psychosocial distress and access barriers, navigators, financial advocates, and social workers can provide essential support.

Effective treatment monitoring protocols should: Outline how symptoms are evaluated and managed.Educate patients about adverse events (AEs) and when to report symptoms.

Patients preferred to have a primary contact person, such as nurse navigator or oncology nurse, for questions or assistance. Providers found that an effective way to assess both treatment and psychosocial concerns was to screen for or directly ask about issues such as anxiety or financial distress during monitoring for treatment-related side effects.

Recommendations for effective communication during treatment monitoring include: Utilize digital tools such as patient portals and secure messaging platforms to track adherence to oral therapies and monitor AEs. Telehealth visits can also be effective.Formally screen patients on a regular basis for concerns beyond medical care to help them feel comfortable discussing emotional distress.Inquire if caregivers would like information about support resources.

Conclusion

The potential for positive clinical outcomes in DLBCL necessitates robust shared decision-making. While a high response rate with first-line treatment offers cautious optimism, a cancer diagnosis remains devastating. Building a foundation of trust through effective communication is essential for a successful therapeutic relationship.