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 Atallah2 1Department of Oncology, McMaster University, Hamilton, Canada; 2Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA; 3US Medical Affairs, Pfizer Inc, New York, NY, USA; 4Medical Affairs, Pfizer Canada Inc., Kirkland, Quebec, Canada; 5Patient Centred Outcomes (PCO), ICON Clinical Research Inc., Reading, UK; 6Patient Centred Outcomes (PCO), ICON Clinical Research Inc., Blue Bell, PA, USA; 7Patient Centred Outcomes (PCO), ICON Clinical Research Inc., Milan, Italy; 8Patient Centred Outcomes (PCO), ICON Clinical Research Inc., Lyon, France; 9The Canadian CML Network, Toronto, Ontario, CanadaCorrespondence: Andrea De Palma, Tel +39 06 45 20 8037, Email Andrea.DePalma@iconplc.comPurpose: 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: chronic myeloid leukemia, quality of life, patient-health care provider relationship, patient experience, survey, North America