November 2017 VOL 8, NO 11

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Category III: Patient Advocacy/Patient Empowerment, Eighth Annual AONN+ Conference Abstracts, Patient Advocacy/Empowerment

A Patient/Provider Discussion Tool for Chronic Myeloid Leukemia

Claire Saxton, MBA1; Heather Hollen, MS1; Jenny Karubian, MA2; Alexandra Zaleta, PhD2
1Cancer Support Community, Washington, DC
2Cancer Support Community, Research and Training Institute
Philadelphia, PA

Background: The Cancer Support Community (CSC) has designed a patient/provider discussion tool for patients with chronic myeloid leukemia (CML). The main goal of the tool is to help patients and caregivers better communicate with their healthcare providers by asking questions to support patients’ and caregivers’ understanding of what their healthcare team is trying to communicate and clearly stating their goals for treatment, any barriers to compliance they are facing, symptoms and side effects, and changes in their daily life that result from CML symptoms and side effects. When CML patients are receiving long-term drug therapy during the chronic phase of their disease, office visits are typically scheduled quarterly or annually. The aim of this tool is to help patients assess their side effects, goals for treatment, and how treatment is affecting their lives, so that they can relay these issues to their provider. It also includes tips for coping and additional resources.

Objectives: (1) Did the tool reflect the top issues CML patients and caregivers want to discuss with their providers? (2) Was the tool useful for a wide range of CML patients and caregivers? How could it be made more useful? (3) Did the tool reflect how CML affects patients’ lives? (4) Could the tool help patients and caregivers articulate the broader impacts of CML to their providers? (5) At what stage of illness is this tool useful? Does it have different uses at different stages?

Methods: CSC created this piece using CSC’s discussion tool for metastatic breast cancer ( as a template. CML-specific information from CSC’s Cancer Experience Registry ( was applied to the template to create a similar tool for CML. The initial draft of the CML tool was shown to the first wave of research participants, who provided qualitative feedback. The CML tool was then refined and presented as stimuli for the second wave of research.

In total, CSC conducted 4 focus groups and 4 individual interviews with 16 CML patients and 3 caregivers.

  • Wave 1 consisted of 3 focus groups and 3 individual interviews
  • Wave 2 consisted of 1 focus group and 1 individual interview

Results: CML patients and caregivers reported that:

  • Most of the top issues they wanted to address with their providers were captured in the initial version of the CML-specific tool. Additional issues requested included the impact of CML on their confidence/self-esteem and additional financial and support resources
  • This tool would be useful for newly diagnosed patients, patients switching to a new treatment or provider, and those who have infrequent visits to their oncologists
  • In the chronic stage of treatment, they can forget side effects that occurred months before their regular oncology visits. The tool can help them remember these details and organize their thoughts
  • They appreciated holistic approaches to managing their care in which treatment goals, life goals, and side effects are considered together. They report a lack of this understanding in the medical system overall
  • They often have difficulty expressing how CML influences their lives (family, work, spiritual, community, etc). They thought this tool would help them think through the ways that health impacts other areas of life

Conclusions: Based on the research results, the discussion tool would be most useful for newly diagnosed patients with CML, as well as for CML patients who were deciding whether to switch or were in the process of switching to a new medication. The intention is for patients and caregivers to use the tool to prepare for discussions during medical appointments. The tool prompts patients to discuss with their healthcare team their treatment goals as well as the impact of CML on their daily life and to seek resources to help them cope with changes in quality of life related to CML. Regarding implementation, CSC has a grant to distribute the tool at no charge to CML patients and caregivers via its internal network of almost 50 Cancer Support Communities and Gilda’s Clubs worldwide, the webpage, the Frankly Speaking About Cancer radio show, and partner patient advocacy groups. Our funder is also proposing to distribute the tool to CML healthcare providers via its salesforce. We would also like to make patient navigators aware of this tool and allow them to order/download it, at no charge, to help CML patients and caregivers improve their communication with healthcare providers.

  • Patients and caregivers want assistance in organizing their thoughts and preparing for oncology visits
  • Caregivers and patients view this tool as a way to empower patients to become active partners in their care and help them find ways to cope with their distress

Sponsorship: This project was supported by an unrestricted grant from Pfizer.


Breccia M, Graffigna G, Galimberti S, et al. Personal history and quality of life in chronic myeloid leukemia patients: a cross-sectional study using narrative medicine and quantitative analysis. Support Care Cancer. 2016;24:4487-4493.

Cancer Support Community. Chronic Myeloid Leukemia (CML) Specialty Registry Report 2017.

Ha JF, Longnecker N. Doctor-patient communication: a review. Ochsner J. 2010;10:38-43.

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