International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer

M. van Leeuwen, Jacobien M. Kieffer, Fabio Efficace, Sophie D. Fosså, Michel Bolla, Laurence Collette, Marc Colombel, Ugo De Giorgi, Bernhard Holzner, L.V. van de Poll-Franse, Hendrik Van Poppel, Jeff White, Ronald De Wit, Susanne Osanto, Neil K. Aaronson

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Abstract

Background:
Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer.
Methods:
In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce.
Results:
Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions.
Conclusions:
The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed
Original languageEnglish
Article number97
JournalHealth and Quality of Life Outcomes
Volume15
Issue number1
DOIs
Publication statusPublished - 1 Jan 2017

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Survivors
Neoplasms
Surveys and Questionnaires
Phase III Clinical Trials
Health Surveys
Cross-Sectional Studies

Cite this

van Leeuwen, M. ; Kieffer, Jacobien M. ; Efficace, Fabio ; Fosså, Sophie D. ; Bolla, Michel ; Collette, Laurence ; Colombel, Marc ; De Giorgi, Ugo ; Holzner, Bernhard ; van de Poll-Franse, L.V. ; Van Poppel, Hendrik ; White, Jeff ; De Wit, Ronald ; Osanto, Susanne ; Aaronson, Neil K. / International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer. In: Health and Quality of Life Outcomes. 2017 ; Vol. 15, No. 1.
@article{83acf2da0fe3467391490a4a495892c1,
title = "International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer",
abstract = "Background: Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer.Methods: In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce.Results: Two hundred forty-two men (66{\%} response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10{\%} of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64{\%} of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions.Conclusions: The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed",
author = "{van Leeuwen}, M. and Kieffer, {Jacobien M.} and Fabio Efficace and Foss{\aa}, {Sophie D.} and Michel Bolla and Laurence Collette and Marc Colombel and {De Giorgi}, Ugo and Bernhard Holzner and {van de Poll-Franse}, L.V. and {Van Poppel}, Hendrik and Jeff White and {De Wit}, Ronald and Susanne Osanto and Aaronson, {Neil K.}",
year = "2017",
month = "1",
day = "1",
doi = "10.1186/s12955-017-0670-4",
language = "English",
volume = "15",
journal = "Health and Quality of Life Outcomes",
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van Leeuwen, M, Kieffer, JM, Efficace, F, Fosså, SD, Bolla, M, Collette, L, Colombel, M, De Giorgi, U, Holzner, B, van de Poll-Franse, LV, Van Poppel, H, White, J, De Wit, R, Osanto, S & Aaronson, NK 2017, 'International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer', Health and Quality of Life Outcomes, vol. 15, no. 1, 97. https://doi.org/10.1186/s12955-017-0670-4

International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer. / van Leeuwen, M.; Kieffer, Jacobien M.; Efficace, Fabio; Fosså, Sophie D.; Bolla, Michel; Collette, Laurence; Colombel, Marc; De Giorgi, Ugo; Holzner, Bernhard; van de Poll-Franse, L.V.; Van Poppel, Hendrik; White, Jeff; De Wit, Ronald; Osanto, Susanne; Aaronson, Neil K.

In: Health and Quality of Life Outcomes, Vol. 15, No. 1, 97, 01.01.2017.

Research output: Contribution to journalArticleScientificpeer-review

TY - JOUR

T1 - International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer

AU - van Leeuwen, M.

AU - Kieffer, Jacobien M.

AU - Efficace, Fabio

AU - Fosså, Sophie D.

AU - Bolla, Michel

AU - Collette, Laurence

AU - Colombel, Marc

AU - De Giorgi, Ugo

AU - Holzner, Bernhard

AU - van de Poll-Franse, L.V.

AU - Van Poppel, Hendrik

AU - White, Jeff

AU - De Wit, Ronald

AU - Osanto, Susanne

AU - Aaronson, Neil K.

PY - 2017/1/1

Y1 - 2017/1/1

N2 - Background: Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer.Methods: In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce.Results: Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions.Conclusions: The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed

AB - Background: Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer.Methods: In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce.Results: Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions.Conclusions: The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed

U2 - 10.1186/s12955-017-0670-4

DO - 10.1186/s12955-017-0670-4

M3 - Article

VL - 15

JO - Health and Quality of Life Outcomes

JF - Health and Quality of Life Outcomes

SN - 1477-7525

IS - 1

M1 - 97

ER -