Background: Health-related quality of life (HRQOL) is a key aspect for chronic myeloid leukemia (CML) patients. The aim of this study was to develop a disease-specific HRQOL questionnaire for patients with CML to supplement the European Organization for Research and Treatment of Cancer (EORTC)-QLQ C30.
Patients And Methods: The process followed a predefined and systematic stepwise iterative process as defined by the EORTC guidelines for questionnaire development. The process was divided into 3 phases: (1) generation of relevant HRQOL issues, (2) operationalization of the HRQOL issues into a set of items, and (3) pretesting the questionnaire for relevance and acceptability. Descriptive statistics and psychometric analyses were also performed.
Results: Overall, 655 CML patients were enrolled in 10 countries including the USA and countries in Europe and Asia. Interviews with health-care professionals experienced in CML (n = 59) were also conducted. Results from the interviews, clinical experiences, and statistical analyses were used to develop the EORTC QLQ-CML24. The final module consists of 24 items assessing the following aspects: symptom burden, impact on daily life and on worry/mood, body image problems, and satisfaction with care and with social life. Internal consistency, assessed with Cronbach's alpha coefficients, ranged from 0.73 to 0.83 for the proposed scales.
Conclusion: The EORTC QLQ-CML24 is an internationally developed HRQOL questionnaire for CML patients, and its implementation in clinical research and practice can provide important information to facilitate clinical decision-making.
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http://dx.doi.org/10.1007/s11136-013-0523-5 | DOI Listing |
Georgian Med News
September 2024
3College of Medicine, University of Sulaimani, Kurdistan region, Iraq.
JCO Glob Oncol
November 2024
Data Center and Health Outcomes Research Unit, Italian Group for Adult Haematologic Diseases (GIMEMA), Rome, Italy.
Purpose: Health-related quality of life (HRQoL) is now an important goal of therapy for patients with chronic myeloid leukemia (CML). However, there is paucity of data for patients living in low-income countries (LICs) and on factors associated with their HRQoL profile. The primary objective was to compare the HRQoL of patients with CML living in an LIC (Ethiopia) with that of patients living in a high-income country (HIC).
View Article and Find Full Text PDFLancet Haematol
October 2023
Department of Haematology, Radboud University Medical Center, Nijmegen, Netherlands.
Insight into real-world treatment-related toxic effects reported by patients has the potential to improve care, benchmark trials, and fill knowledge gaps, especially in patients with chronic myeloid leukaemia, which is treated in the majority of patients continually with tyrosine-kinase inhibitors (TKIs). The aim of our systematic review was to investigate the content validity of instruments that elicit TKI-related toxic effects reported by patients with chronic myeloid leukaemia in the real world. We searched PubMed and Embase from Jan 1, 2017 to Oct 21, 2022.
View Article and Find Full Text PDFCurr Hematol Malig Rep
December 2021
Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
Purpose Of Review: Tyrosine kinase inhibitors (TKIs) allow many patients with chronic myeloid leukemia (CML) to live normal life spans but have the potential to impact patients' health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures can provide valuable information to inform treatment decision-making. Here, we review pivotal studies that used PRO measures to evaluate HRQOL of patients with CML in the first-line and treatment-free remission (TFR), and identify areas for future research.
View Article and Find Full Text PDFQual Life Res
July 2021
Department of Biostatistics and Epidemiology, Gustave Roussy, Villejuif, France.
Purpose: Tyrosine kinase inhibitors (TKIs) have dramatically improved the prognosis of chronic myeloid leukemia (CML). We aimed to assess health state utility and quality of life (QoL) in French patients with CML in real-life setting, to study the determinants of utility score and to compare health-related QoL values to general population norms.
Methods: We conducted a cross-sectional study in 412 patients with CML.
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