Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey

Abstract Polycythemia vera (PV) is a myeloproliferative neoplasm associated with a high symptom and psychological burden, resulting in decreased quality of life (QoL). Patients with PV have an increased risk of cardiovascular (CV) complications, making regular monitoring crucial. The Landmark 2.0 su...

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Main Authors: Claire N. Harrison, David M. Ross, Laura Maria Fogliatto, Lynda Foltz, Lambert Busque, Zhijian Xiao, Florian H. Heidel, Michael Koehler, Giuseppe A. Palumbo, Massimo Breccia, Norio Komatsu, Keita Kirito, Blanca Xicoy Cirici, Joaquin Martinez‐Lopez, Alicia Rovo, Cheryl Petruk, Catalin Bobirca, Laura Mirams, Abigail McMillan, Gavin Harper, Jean‐Jacques Kiladjian
Format: Article
Language:English
Published: Wiley 2025-03-01
Series:HemaSphere
Online Access:https://doi.org/10.1002/hem3.70106
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author Claire N. Harrison
David M. Ross
Laura Maria Fogliatto
Lynda Foltz
Lambert Busque
Zhijian Xiao
Florian H. Heidel
Michael Koehler
Giuseppe A. Palumbo
Massimo Breccia
Norio Komatsu
Keita Kirito
Blanca Xicoy Cirici
Joaquin Martinez‐Lopez
Alicia Rovo
Cheryl Petruk
Catalin Bobirca
Laura Mirams
Abigail McMillan
Gavin Harper
Jean‐Jacques Kiladjian
author_facet Claire N. Harrison
David M. Ross
Laura Maria Fogliatto
Lynda Foltz
Lambert Busque
Zhijian Xiao
Florian H. Heidel
Michael Koehler
Giuseppe A. Palumbo
Massimo Breccia
Norio Komatsu
Keita Kirito
Blanca Xicoy Cirici
Joaquin Martinez‐Lopez
Alicia Rovo
Cheryl Petruk
Catalin Bobirca
Laura Mirams
Abigail McMillan
Gavin Harper
Jean‐Jacques Kiladjian
author_sort Claire N. Harrison
collection DOAJ
description Abstract Polycythemia vera (PV) is a myeloproliferative neoplasm associated with a high symptom and psychological burden, resulting in decreased quality of life (QoL). Patients with PV have an increased risk of cardiovascular (CV) complications, making regular monitoring crucial. The Landmark 2.0 survey was conducted worldwide among patients with PV and their treating physicians to identify any potential gaps in perceptions regarding PV management. Data were collected between April 2021 and April 2022 from physicians and patients across 11 countries. Overall, 133 physicians and 274 patients with PV participated in the survey. There were discrepancies between physicians and patients in reporting whether symptom assessments and basic CV assessments were conducted during routine visits (83% vs. 68% and 64% vs. 55%, respectively). Emotional assessments were not performed routinely (reported by 36% of physicians and 34% of patients). Patients attributed the highest impact on QoL to physical symptoms (67%); however, physicians were less likely to report highly prevalent symptoms such as bruising, difficulty sleeping, inactivity, and depression among the most common symptoms. While both physicians and patients aimed for symptom improvement, their treatment goals differed: physicians focused on managing hematocrit, preventing thrombotic events, and reducing spleen size, while patients focused on slowing down disease progression. Patient satisfaction with treatment was generally high but decreased in later therapy stages. Overall, these data underscore the disparity in patient–physician perceptions of PV management and treatment expectations, showing the gaps in communication and the need for greater patient education, as well as highlighting areas for potential improvement in clinical practice.
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spelling doaj-art-748ba6bc65a345cb82da7f0a40f468872025-08-20T02:48:45ZengWileyHemaSphere2572-92412025-03-0193n/an/a10.1002/hem3.70106Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health surveyClaire N. Harrison0David M. Ross1Laura Maria Fogliatto2Lynda Foltz3Lambert Busque4Zhijian Xiao5Florian H. Heidel6Michael Koehler7Giuseppe A. Palumbo8Massimo Breccia9Norio Komatsu10Keita Kirito11Blanca Xicoy Cirici12Joaquin Martinez‐Lopez13Alicia Rovo14Cheryl Petruk15Catalin Bobirca16Laura Mirams17Abigail McMillan18Gavin Harper19Jean‐Jacques Kiladjian20Guy's and St Thomas' NHS Foundation Trust London UKRoyal Adelaide Hospital and SA Pathology Adelaide AustraliaHospital de Clinicas de Porto Alegre Porto Alegre BrazilUniversity of British Columbia Vancouver British Columbia CanadaHôpital Maisonneuve‐Rosemont, University of Montreal Montreal Quebec CanadaInstitute of Hematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College Tianjin ChinaHematology, Hemostasis, Oncology and Stem Cell Transplantation Hannover Medical School (MHH) Hannover GermanySpecialty Practice for Psycho‐Oncology Magdeburg GermanyDipartimento di Scienze Mediche Chirurgiche e Tecnologie Avanzate “G.F. Ingrassia” University of Catania Catania ItalyUniversity of Rome La Sapienza Roma ItalyJuntendo University School of Medicine Tokyo JapanUniversity of Yamanashi Chuo JapanICO Hospital Germans Trias i Pujol, Josep Carreras Leukemia Research Institute, Universitat Autònoma de Barcelona Barcelona SpainUniversity Hospital October 12, I+12 institute, CNI, CIBERONC, Complutense University Madrid SpainDepartment of Hematology and Central Hematology Laboratory Inselspital, University Hospital of Bern Bern SwitzerlandHeal Canada Markham Ontario CanadaNovartis Pharma AG Basel SwitzerlandAdelphi Real World Bollington United KingdomAdelphi Real World Bollington United KingdomAdelphi Real World Bollington United KingdomAP‐HP Hôpital Saint‐Louis, Université Paris Cité, INSERM CIC1427 Paris FranceAbstract Polycythemia vera (PV) is a myeloproliferative neoplasm associated with a high symptom and psychological burden, resulting in decreased quality of life (QoL). Patients with PV have an increased risk of cardiovascular (CV) complications, making regular monitoring crucial. The Landmark 2.0 survey was conducted worldwide among patients with PV and their treating physicians to identify any potential gaps in perceptions regarding PV management. Data were collected between April 2021 and April 2022 from physicians and patients across 11 countries. Overall, 133 physicians and 274 patients with PV participated in the survey. There were discrepancies between physicians and patients in reporting whether symptom assessments and basic CV assessments were conducted during routine visits (83% vs. 68% and 64% vs. 55%, respectively). Emotional assessments were not performed routinely (reported by 36% of physicians and 34% of patients). Patients attributed the highest impact on QoL to physical symptoms (67%); however, physicians were less likely to report highly prevalent symptoms such as bruising, difficulty sleeping, inactivity, and depression among the most common symptoms. While both physicians and patients aimed for symptom improvement, their treatment goals differed: physicians focused on managing hematocrit, preventing thrombotic events, and reducing spleen size, while patients focused on slowing down disease progression. Patient satisfaction with treatment was generally high but decreased in later therapy stages. Overall, these data underscore the disparity in patient–physician perceptions of PV management and treatment expectations, showing the gaps in communication and the need for greater patient education, as well as highlighting areas for potential improvement in clinical practice.https://doi.org/10.1002/hem3.70106
spellingShingle Claire N. Harrison
David M. Ross
Laura Maria Fogliatto
Lynda Foltz
Lambert Busque
Zhijian Xiao
Florian H. Heidel
Michael Koehler
Giuseppe A. Palumbo
Massimo Breccia
Norio Komatsu
Keita Kirito
Blanca Xicoy Cirici
Joaquin Martinez‐Lopez
Alicia Rovo
Cheryl Petruk
Catalin Bobirca
Laura Mirams
Abigail McMillan
Gavin Harper
Jean‐Jacques Kiladjian
Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
HemaSphere
title Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
title_full Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
title_fullStr Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
title_full_unstemmed Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
title_short Patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera: Insights from the Landmark 2.0 global health survey
title_sort patient and physician perceptions regarding treatment expectations and symptomatology in polycythemia vera insights from the landmark 2 0 global health survey
url https://doi.org/10.1002/hem3.70106
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