Developing a Patient/Provider Discussion Tool for Chronic Lymphocytic Leukemia

November 2019 Vol 10, No 11
Claire Saxton
Vice President of Patient Experience, Cancer Support Community
Maria B. Gonzalo, MS
Cancer Support Community,
Washington, DC
Sheri Walters, BSW, MPH
Cancer Support Community,
Washington, DC
Jenny Karubian, MA
Ready to Launch Research
Los Angeles, CA
Amelia Roberts, MPH
Cancer Support Community,
Washington, DC
Alexandra K. Zaleta, PhD
Research and Training Institute, Cancer Support Community,
Philadelphia, PA

Background: The National Cancer Institute estimates more than 20,000 people will be diagnosed and over 163,000 people will be living with chronic lymphocytic leukemia (CLL) in the United States in 2019. In 2017, nearly 40% of CLL patients who participated in the Cancer Support Community (CSC) Cancer Experience Registry reported that they were not sufficiently prepared to make treatment decisions and communicate with their healthcare team. In 2018, CSC developed a patient/provider discussion tool to help patients better communicate with their healthcare team.

Objective: Develop a patient/provider discussion support tool tailored to CLL patients’ specific challenges related to making decisions about the risks vs benefits of treatment, short- and long-term side effects of treatment, their stage of life, and the impact on family and friends.

Methods: CSC created the draft tool for CLL patient/provider communication using CSC’s discussion tool for CML (cml-disctool.pdf) as a template. The draft tool was tested in focus groups with CLL patients to assess whether it met their needs. The initial draft was shown to the first wave of research participants, who provided qualitative feedback. The CLL tool was then refined and presented as stimuli for the second wave of research.

In total, CSC conducted 4 focus groups with 20 CLL patients. Focus group participants were asked to give feedback about the following:

  • Did the tool reflect the top issues CLL patients want to discuss with their providers?
  • Was the tool useful for a wide range of CLL patients? How could it be made more useful?
  • Did the tool reflect how CLL affects patients’ lives?
  • Could the tool help patients articulate the broader impacts of CLL to their providers?

Results: Focus group participants reported that:

  • Most of the top issues (eg, side effects, treatment goals) they wanted to address with their providers were captured in the initial version of the tool. Additional feedback included adding a system to track side effects and changes in treatment goals and suggestions for additional financial and support resources
  • This tool would be most useful for newly diagnosed patients with CLL and those who were deciding whether to switch to a new treatment or provider
  • The tool could help them think about treatment goals and communicate with the healthcare team during medical appointments
  • This tool would guide them to think through the ways that health impacts various areas of life and seek appropriate resources

Conclusions: Findings suggest that the CLL discussion tool can help patients better communicate with their healthcare team, prompt discussions about treatment goals, and motivate patients to seek resources to help them cope with changes in quality of life related to CLL.

Regarding implementation, CSC distributes the tool at no charge to CLL patients and caregivers via its internal network of almost 50 Cancer Support Communities and Gilda’s Clubs worldwide.

We would also like to make patient navigators aware of this tool and allow them to order/download it, at no charge, to help CLL patients improve their communication with healthcare providers.

Note: This project was supported by a grant from Pfizer.


  1. Cancer Support Community. Chronic Lymphocytic Leukemia (CLL) Specialty Registry Report 2017. 2017.
  2. Ha JF, Longnecker N. Doctor-patient communication: a review. Ochsner J. 2010;10:38-43.
  3. Shanafelt TD, Bowen DA, Venkat C, et al. The physician-patient relationship and quality of life: lessons from chronic lymphocytic leukemia. Leuk Res. 2009;33:263-270.
  4. Westbrook TD, Maddocks K, Andersen BL. The relation of illness perceptions to stress, depression, and fatigue in patients with chronic lymphocytic leukaemia. Psych Health. 2016;31:891-902.
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