Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Feb 3:17:331-347.
doi: 10.2147/PPA.S394332. eCollection 2023.

A Survey of Patient Experience in CML: American and Canadian Perspectives

Christopher Hillis  1 , Kathryn E Flynn  2 , Erinn Hoag Goldman  3 , Tracy S Moreira-Lucas  4 , Josie Visentini  4 , Stephanie Dorman  4 , Rachel Ballinger  5 , Hilary F Byrnes  6 , Andrea De Palma  7 , Valentin Barbier  8 , Lisa Machado  9 , Ehab Atallah  2
Affiliations

A Survey of Patient Experience in CML: American and Canadian Perspectives

Christopher Hillis et al. Patient Prefer Adherence. .

Abstract

Purpose: With treatment, chronic myeloid leukemia (CML) has a favorable prognosis, however, individuals with CML experience impairment to their quality of life (QoL). The aim of this study was to examine the perspectives and experiences of individuals with CML and to understand their challenges communicating with their CML physician.

Patients and methods: An online survey in adults with CML (n=100) in the US and Canada assessed QoL, patient-provider relationships, treatment satisfaction, and understanding of CML and treatment goals via the MD Anderson Symptom Inventory, the Cancer Therapy Satisfaction Questionnaire and de novo survey questions. Participants were recruited via an external patient recruiter and CML Patient Groups.

Results: Many participants reported hardships due to CML and its treatment. The main impacts were on the ability to work (21%), engage in personal activities (e.g., hobbies, 28%), and to enjoy sexual relations (median=2.00, IQR=8.50). A substantial proportion (21-39%) wished to discuss additional topics with their providers (e.g., management of CML and/or its impacts). While participants reported satisfaction with therapy overall (median=85.71, IQR=17.86), they indicated low to moderate treatment satisfaction with specific components, including concerns regarding side effects (median=43.75, IQR=43.75). Participants generally had a good understanding of CML (97%) and its treatment goals (92%).

Conclusion: These findings advance our understanding of issues that need improvement to support QoL for individuals living with CML. Future work is needed to improve patient-provider relationships, address treatment-related side effects, and provide clinical information that is easier for patients to understand.

Keywords: North America; chronic myeloid leukemia; patient experience; patient-health care provider relationship; quality of life; survey.

PubMed Disclaimer

Conflict of interest statement

EHG, TSML, JV, and SD are employees of Pfizer Inc. RB, HFB, ADP, and VB, employees of ICON, received consultancy fees from Pfizer. KEF and CH received consultancy fees from Pfizer. CH also reports grants from Novartis, outside the submitted work. KEF also reports consultancy fees from Inhibikase and grant to her institution from Novartis, outside the submitted work. EA receives research support and consultancy fees from Novartis and Takeda, and consultancy fees from BMS, Abbvie and Pfizer. The remaining authors report no conflicts of interest in this work.

References

    1. Boons C, Harbers L, Timmers L, et al. Needs for information and reasons for (non)adherence in chronic myeloid leukaemia: be aware of social activities disturbing daily routines. Eur J Haematol. 2018;101:643–653. doi:10.1111/ejh.13155 - DOI - PubMed
    1. Sessions J. Chronic myeloid leukemia in 2007. J Manag Care Pharm. 2007;13(8Suppl A):4–7. doi:10.18553/jmcp.2007.13.s8-a.4 - DOI - PMC - PubMed
    1. Hochhaus A, Baccarani M, Silver RT, et al. European LeukemiaNet 2020 recommendations for treating chronic myeloid leukemia. Leukemia. 2020;34(4):966–984. doi:10.1038/s41375-020-0776-2 - DOI - PMC - PubMed
    1. Howard DH, Chernew ME, Abdelgawad T, Smith GL, Sollano J, Grabowski DC. New anticancer drugs associated with large increases in costs and life expectancy. Health Aff. 2016;35(9):1581–1587. doi:10.1377/hlthaff.2016.0286 - DOI - PubMed
    1. Canadian_Cancer_Society. Survival statistics for chronic myelogenous leukemia; 2022. Available from: https://cancer.ca/en/cancer-information/cancer-types/chronic-myelogenous.... Accessed January 26, 2023.