Chronic Lymphocytic Leukemia: The Patient Journey

Introduction. A chronic lymphocytic leukemia (CLL) diagnosis can be a frightening and confusing experience for both patients and caregivers. Understanding the patient experience can help identify challenges patients face and allow for the development of action plans to guide their journey.

Methods. A group of patients, caregivers, and thought leaders from key advocacy organizations and cancer centers held a roundtable on November 13, 2018, in New York City to discuss the patient experience for individuals diagnosed with CLL. The objective of this roundtable was to agree on strategies to optimize the patient journey for those diagnosed with CLL.

Results. Gaps identified in the experience of patients with CLL included limited opportunities to ask questions at diagnosis (especially if given the information over the phone), availability of second opinions, inadequate time with their physician/care team, variability in the quality and quantity of available educational resources, lack of awareness with regard to biomarker testing, inadequate discussion of treatment options and clinical trials, financial concerns, and lack of emotional support. Roundtable attendees selected five of these challenges to discuss in detail and proposed strategies to address them: 1) Development of a medical team fact sheet was proposed to help patients understand who is involved in their medical care and identify the appropriate team member to whom they can address specific questions with regard to their disease and treatment. Such a resource could help ensure patients' questions are answered in a healthcare setting where physicians' time is increasingly limited; 2) Educating patients and physicians on the importance of early access to emotional support and providing them with information on how to find these resources was identified as another important goal. Fact sheets and resources on the benefits of emotional support as well as directories to help patients access social workers/counselors, psychosocial oncology providers, or support groups would help ensure patients receive the emotional support they need; 3) To address lack of awareness of biomarker testing, roundtable attendees suggested the creation of a fact sheet on biomarker testing (common mutations, required tests, etc) to ensure all physicians and patients know what tests are needed, and when they should be done. Implementation of strategies to increase biomarker testing will help ensure that the best treatment option is identified for each patient; 4) Patients are often unaware of financial assistance that may be available to them, and databases (eg, CancerFAC.org) that serve as resources for financial assistance are often not updated frequently enough to keep up with the constantly evolving financial landscape. Creating a system for regular updates of CancerFAC.org, a financial resource database hosted by CancerCare and other advocacy organizations such as The Leukemia & Lymphoma Society and the Lymphoma Research Foundation, and ensuring patients are aware of this resource, would help patients navigate the financial options available to them at any given time; 5) Finally, development of plain language (sixth-grade reading level), accessible information on the potential benefits of clinical trials, easy-to-navigate listings of ongoing trials, and connections for patients to nurse navigators could help address lack of patient understanding of what clinical trials are and when and if they might be appropriate for each individual patient.

Conclusion. Appropriate information and guidance from the healthcare team and access to up-to-date and easy-to-use resources can help alleviate anxiety and improve the patient journey for those diagnosed with CLL. Roundtable participants developed strategies and action plans to help meet several important needs of patients with CLL at the time of diagnosis.

Funding was provided by Pharmacyclics LLC, an AbbVie Company, and Janssen Biotech, Inc, administered by Janssen Scientific Affairs, LLC.