Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey
For patients with chronic myeloid leukemia in chronic phase (CML-CP), disease management, treatment experiences, and decisions around switching therapies due to resistance or intolerance can have significant impacts on their lives. Experiences and perspectives regarding the roles of patients and tr...
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| Format: | Article |
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Ferrata Storti Foundation
2025-07-01
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| Series: | Haematologica |
| Online Access: | https://haematologica.org/article/view/12170 |
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| author | Fabian Lang Zack Pemberton-Whiteley Joannie Clements Cristina Ruiz Delphine Rea Lisa Machado Naoto Takahashi Sung-Ho Moon Andrew Grigg Cornelia Borowczak Peter Schuld Pauline Frank Cristina Constantinescu Carla Boquimpani Jorge E. Cortes |
| author_facet | Fabian Lang Zack Pemberton-Whiteley Joannie Clements Cristina Ruiz Delphine Rea Lisa Machado Naoto Takahashi Sung-Ho Moon Andrew Grigg Cornelia Borowczak Peter Schuld Pauline Frank Cristina Constantinescu Carla Boquimpani Jorge E. Cortes |
| author_sort | Fabian Lang |
| collection | DOAJ |
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For patients with chronic myeloid leukemia in chronic phase (CML-CP), disease management, treatment experiences, and decisions around switching therapies due to resistance or intolerance can have significant impacts on their lives. Experiences and perspectives regarding the roles of patients and treating physicians in shared decision-making are poorly understood. The CML Survey on Unmet Needs (CML SUN), the largest CML survey to date, was initiated to gather insights from patients with CML-CP and physicians on disease management, including treatment goals, decision-making, satisfaction, tolerability and the impact of CML on daily life. The survey was deployed in 11 countries with 361 patient and 198 physician participants and comprised separate questionnaires for each group. Results indicated that nearly three-quarters of physicians saw themselves as the ultimate initial treatment decision-makers; only a quarter of patients reported that these decisions were discussed and decided together with their physician. Nearly half of physicians reported making treatment decisions across all lines of therapy with little to no input from the patient. Disparities between patient and physician opinions were observed regarding treatment goals, especially the balance between efficacy and tolerability. The CML SUN highlights the need for improvements in communication about treatment options and the importance of shared treatment decisionmaking to unify treatment goals.
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| format | Article |
| id | doaj-art-44c624a142a04568a249cde7db8d6d6f |
| institution | DOAJ |
| issn | 0390-6078 1592-8721 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Ferrata Storti Foundation |
| record_format | Article |
| series | Haematologica |
| spelling | doaj-art-44c624a142a04568a249cde7db8d6d6f2025-08-20T03:17:35ZengFerrata Storti FoundationHaematologica0390-60781592-87212025-07-01999110.3324/haematol.2025.287772Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN surveyFabian Lang0Zack Pemberton-Whiteley1Joannie Clements2Cristina Ruiz3Delphine Rea4Lisa Machado5Naoto Takahashi6Sung-Ho Moon7Andrew Grigg8Cornelia Borowczak9Peter Schuld10Pauline Frank11Cristina Constantinescu12Carla Boquimpani13Jorge E. Cortes14Department of Medicine, Hematology/Oncology, University Hospital, Goethe University Frankfurt, Frankfurt a. MainLeukaemia Care, WorcesterCML Buster Foundation, Costa Mesa, CACML Buster Foundation, Costa Mesa, CAHôpital Saint-Louis, ParisCanadian CML Network, Toronto, ONAkita University Graduate School of Medicine, AkitaKorea Leukemia Patients Organization, SeoulAustin Hospital, Melbourne, VICLeukaNET, HohenbrunnNovartis Pharma AG, BaselNovartis Pharma AG, BaselIpsos, BaselHemorio, Rio de Janeiro, BrazilGeorgia Cancer Center, Augusta University, Augusta, GA For patients with chronic myeloid leukemia in chronic phase (CML-CP), disease management, treatment experiences, and decisions around switching therapies due to resistance or intolerance can have significant impacts on their lives. Experiences and perspectives regarding the roles of patients and treating physicians in shared decision-making are poorly understood. The CML Survey on Unmet Needs (CML SUN), the largest CML survey to date, was initiated to gather insights from patients with CML-CP and physicians on disease management, including treatment goals, decision-making, satisfaction, tolerability and the impact of CML on daily life. The survey was deployed in 11 countries with 361 patient and 198 physician participants and comprised separate questionnaires for each group. Results indicated that nearly three-quarters of physicians saw themselves as the ultimate initial treatment decision-makers; only a quarter of patients reported that these decisions were discussed and decided together with their physician. Nearly half of physicians reported making treatment decisions across all lines of therapy with little to no input from the patient. Disparities between patient and physician opinions were observed regarding treatment goals, especially the balance between efficacy and tolerability. The CML SUN highlights the need for improvements in communication about treatment options and the importance of shared treatment decisionmaking to unify treatment goals. https://haematologica.org/article/view/12170 |
| spellingShingle | Fabian Lang Zack Pemberton-Whiteley Joannie Clements Cristina Ruiz Delphine Rea Lisa Machado Naoto Takahashi Sung-Ho Moon Andrew Grigg Cornelia Borowczak Peter Schuld Pauline Frank Cristina Constantinescu Carla Boquimpani Jorge E. Cortes Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey Haematologica |
| title | Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey |
| title_full | Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey |
| title_fullStr | Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey |
| title_full_unstemmed | Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey |
| title_short | Improving chronic myeloid leukemia management and quality of life: patient and physician survey on unmet needs from the CML SUN survey |
| title_sort | improving chronic myeloid leukemia management and quality of life patient and physician survey on unmet needs from the cml sun survey |
| url | https://haematologica.org/article/view/12170 |
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