The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights

Abstract Background The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 Dimensions (QLU-C10D) is a novel cancer-specific preference-based measure (PBM) for which value sets are being developed for an increasing number of countries. This is done by o...

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Main Authors: Eva-Maria Gamper, Madeleine T. King, Richard Norman, Fanny L. C. Loth, Bernhard Holzner, Georg Kemmler, the EORTC Quality of Life Group^
Format: Article
Language:English
Published: SpringerOpen 2022-05-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Online Access:https://doi.org/10.1186/s41687-022-00430-5
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author Eva-Maria Gamper
Madeleine T. King
Richard Norman
Fanny L. C. Loth
Bernhard Holzner
Georg Kemmler
the EORTC Quality of Life Group^
author_facet Eva-Maria Gamper
Madeleine T. King
Richard Norman
Fanny L. C. Loth
Bernhard Holzner
Georg Kemmler
the EORTC Quality of Life Group^
author_sort Eva-Maria Gamper
collection DOAJ
description Abstract Background The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 Dimensions (QLU-C10D) is a novel cancer-specific preference-based measure (PBM) for which value sets are being developed for an increasing number of countries. This is done by obtaining health preferences from the respective general population. There is an ongoing discussion if instead patients suffering from the disease in question should be asked for their preferences. We used the QLU-C10D valuation survey, originally designed for use in the general population, in a sample of cancer patients in Austria to assess the methodology’s acceptability and applicability in this target group before obtaining QLU-C10D patient preferences. Methods The core of the QLU-C10D valuation survey is a discrete choice experiment in which respondents are asked to give preferences for certain health states (described by a relatively large number of 10 quality of life domains) and an associated survival time. They therewith are asked to trade off quality of life against life time. As this might be a very burdensome task for cancer patients undergoing treatment, a cognitive interview was conducted in a pilot sample to assess burden and potential additional needs for explanation in order to be able to use the DCE for the development of QLU-C10D patient preferences. In addition, responses to general feedback questions on the survey were compared against responses from a matched control group from the already completed Austrian general population valuation survey. Results We included 48 patients (mean age 59.9 years; 46% female). In the cognitive interview, the majority indicated that their experience with the survey was positive (85%) and overall clarity as good (90%). In response to the general feedback questions, patients rated the presentation of the health states less clear than matched controls (p = 0.008). There was no difference between patients and the general population concerning the difficulty in choosing between the health states (p = 0.344). Conclusion Despite the relatively large number of DCE domains the survey was manageable for patients and allows going on with the QLU-C10D patient valuation study.
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spelling doaj.art-27a4c34dc08340409f54912866728a132022-12-22T00:43:37ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202022-05-016111010.1186/s41687-022-00430-5The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weightsEva-Maria Gamper0Madeleine T. King1Richard Norman2Fanny L. C. Loth3Bernhard Holzner4Georg Kemmler5the EORTC Quality of Life Group^Innsbruck Institute of Patient-Centered Outcome Research (IIPCOR)School of Psychology, Faculty of Science, University of SydneySchool of Public Health, Curtin UniversityFaculty of Philosophy and Education, Catholic University of Eichstätt-IngolstadtDepartment of Psychiatry, Psychotherapy and Psychosomatics, Psychiatry II, Medical University of InnsbruckDepartment of Psychiatry, Psychotherapy and Psychosomatics, Psychiatry I, Medical University of InnsbruckAbstract Background The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 Dimensions (QLU-C10D) is a novel cancer-specific preference-based measure (PBM) for which value sets are being developed for an increasing number of countries. This is done by obtaining health preferences from the respective general population. There is an ongoing discussion if instead patients suffering from the disease in question should be asked for their preferences. We used the QLU-C10D valuation survey, originally designed for use in the general population, in a sample of cancer patients in Austria to assess the methodology’s acceptability and applicability in this target group before obtaining QLU-C10D patient preferences. Methods The core of the QLU-C10D valuation survey is a discrete choice experiment in which respondents are asked to give preferences for certain health states (described by a relatively large number of 10 quality of life domains) and an associated survival time. They therewith are asked to trade off quality of life against life time. As this might be a very burdensome task for cancer patients undergoing treatment, a cognitive interview was conducted in a pilot sample to assess burden and potential additional needs for explanation in order to be able to use the DCE for the development of QLU-C10D patient preferences. In addition, responses to general feedback questions on the survey were compared against responses from a matched control group from the already completed Austrian general population valuation survey. Results We included 48 patients (mean age 59.9 years; 46% female). In the cognitive interview, the majority indicated that their experience with the survey was positive (85%) and overall clarity as good (90%). In response to the general feedback questions, patients rated the presentation of the health states less clear than matched controls (p = 0.008). There was no difference between patients and the general population concerning the difficulty in choosing between the health states (p = 0.344). Conclusion Despite the relatively large number of DCE domains the survey was manageable for patients and allows going on with the QLU-C10D patient valuation study.https://doi.org/10.1186/s41687-022-00430-5QLU-C10DUtility instrumentPatient utilitiesDiscrete choice experimentTrade-offQuality of life
spellingShingle Eva-Maria Gamper
Madeleine T. King
Richard Norman
Fanny L. C. Loth
Bernhard Holzner
Georg Kemmler
the EORTC Quality of Life Group^
The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
Journal of Patient-Reported Outcomes
QLU-C10D
Utility instrument
Patient utilities
Discrete choice experiment
Trade-off
Quality of life
title The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
title_full The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
title_fullStr The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
title_full_unstemmed The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
title_short The EORTC QLU-C10D discrete choice experiment for cancer patients: a first step towards patient utility weights
title_sort eortc qlu c10d discrete choice experiment for cancer patients a first step towards patient utility weights
topic QLU-C10D
Utility instrument
Patient utilities
Discrete choice experiment
Trade-off
Quality of life
url https://doi.org/10.1186/s41687-022-00430-5
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