International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: The EORTC QLQ-CML24

Fabio Efficace, Michele Baccarani, Massimo Breccia, Susanne Saussele, Gregory Abel, Giovanni Caocci, Francois Guilhot, Kim Cocks, Adel Naeem, Mirjam Sprangers, Simone Oerlemans, Weichu Chie, Fausto Castagnetti, Felice Bombaci, Giora Sharf, Annarita Cardoni, Lucien Noens, Stephan Pallua, Marzia Salvucci, Ourania Nicolatou-GalitisGianantonio Rosti, Franco Mandelli

Research output: Contribution to journalArticleScientificpeer-review

Abstract

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.
Keywords: Quality of life, Chronic myeloid leukemia, Questionnaire
Original languageEnglish
Pages (from-to)825-836
JournalQuality of Life Research
Volume23
Issue number3
DOIs
Publication statusPublished - Apr 2014

Keywords

  • Quality of life
  • Chronic myeloid leukemia
  • Questionnaire

Cite this

Efficace, Fabio ; Baccarani, Michele ; Breccia, Massimo ; Saussele, Susanne ; Abel, Gregory ; Caocci, Giovanni ; Guilhot, Francois ; Cocks, Kim ; Naeem, Adel ; Sprangers, Mirjam ; Oerlemans, Simone ; Chie, Weichu ; Castagnetti, Fausto ; Bombaci, Felice ; Sharf, Giora ; Cardoni, Annarita ; Noens, Lucien ; Pallua, Stephan ; Salvucci, Marzia ; Nicolatou-Galitis, Ourania ; Rosti, Gianantonio ; Mandelli, Franco. / International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients : The EORTC QLQ-CML24. In: Quality of Life Research. 2014 ; Vol. 23, No. 3. pp. 825-836.
@article{404fac3b01c6417fb34a90130c4ef2ac,
title = "International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: The EORTC QLQ-CML24",
abstract = "BackgroundHealth-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 methodsThe 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.ResultsOverall, 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.ConclusionThe 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.Keywords: Quality of life, Chronic myeloid leukemia, Questionnaire",
keywords = "Quality of life, Chronic myeloid leukemia, Questionnaire",
author = "Fabio Efficace and Michele Baccarani and Massimo Breccia and Susanne Saussele and Gregory Abel and Giovanni Caocci and Francois Guilhot and Kim Cocks and Adel Naeem and Mirjam Sprangers and Simone Oerlemans and Weichu Chie and Fausto Castagnetti and Felice Bombaci and Giora Sharf and Annarita Cardoni and Lucien Noens and Stephan Pallua and Marzia Salvucci and Ourania Nicolatou-Galitis and Gianantonio Rosti and Franco Mandelli",
year = "2014",
month = "4",
doi = "10.1007/s11136-013-0523-5",
language = "English",
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journal = "Quality of Life Research",
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Efficace, F, Baccarani, M, Breccia, M, Saussele, S, Abel, G, Caocci, G, Guilhot, F, Cocks, K, Naeem, A, Sprangers, M, Oerlemans, S, Chie, W, Castagnetti, F, Bombaci, F, Sharf, G, Cardoni, A, Noens, L, Pallua, S, Salvucci, M, Nicolatou-Galitis, O, Rosti, G & Mandelli, F 2014, 'International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: The EORTC QLQ-CML24', Quality of Life Research, vol. 23, no. 3, pp. 825-836. https://doi.org/10.1007/s11136-013-0523-5

International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients : The EORTC QLQ-CML24. / Efficace, Fabio; Baccarani, Michele; Breccia, Massimo; Saussele, Susanne; Abel, Gregory; Caocci, Giovanni; Guilhot, Francois; Cocks, Kim; Naeem, Adel; Sprangers, Mirjam; Oerlemans, Simone; Chie, Weichu; Castagnetti, Fausto; Bombaci, Felice; Sharf, Giora; Cardoni, Annarita; Noens, Lucien; Pallua, Stephan; Salvucci, Marzia; Nicolatou-Galitis, Ourania; Rosti, Gianantonio; Mandelli, Franco.

In: Quality of Life Research, Vol. 23, No. 3, 04.2014, p. 825-836.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients

T2 - The EORTC QLQ-CML24

AU - Efficace, Fabio

AU - Baccarani, Michele

AU - Breccia, Massimo

AU - Saussele, Susanne

AU - Abel, Gregory

AU - Caocci, Giovanni

AU - Guilhot, Francois

AU - Cocks, Kim

AU - Naeem, Adel

AU - Sprangers, Mirjam

AU - Oerlemans, Simone

AU - Chie, Weichu

AU - Castagnetti, Fausto

AU - Bombaci, Felice

AU - Sharf, Giora

AU - Cardoni, Annarita

AU - Noens, Lucien

AU - Pallua, Stephan

AU - Salvucci, Marzia

AU - Nicolatou-Galitis, Ourania

AU - Rosti, Gianantonio

AU - Mandelli, Franco

PY - 2014/4

Y1 - 2014/4

N2 - BackgroundHealth-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 methodsThe 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.ResultsOverall, 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.ConclusionThe 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.Keywords: Quality of life, Chronic myeloid leukemia, Questionnaire

AB - BackgroundHealth-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 methodsThe 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.ResultsOverall, 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.ConclusionThe 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.Keywords: Quality of life, Chronic myeloid leukemia, Questionnaire

KW - Quality of life

KW - Chronic myeloid leukemia

KW - Questionnaire

U2 - 10.1007/s11136-013-0523-5

DO - 10.1007/s11136-013-0523-5

M3 - Article

VL - 23

SP - 825

EP - 836

JO - Quality of Life Research

JF - Quality of Life Research

SN - 0962-9343

IS - 3

ER -