Health Research Case Study- SurveyEngine GmbH

Health Research Case Study-

Understanding Preferences for Cancer-Specific Health-Related Quality of Life

The Problem
Health-related quality of life (HRQoL) serves as a measure of an individual’s overall well-being concerning their health status. While clinical decision makers utilize these measures directly to monitor patients’ well-being, health economics decision makers require slightly different information. Ultimately, what they need to know is people’s preferences toward specific outcomes or health statuses. For example, how much do individuals value increased social functioning? How would they trade off between greater longevity and functional/symptom decline? Knowledge of a population’s average preferences empowers decision makers to construct health system budgets that align with people’s actual values.

Step One: Validating a Cancer-Specific HRQoL Measure
A cross-disciplinary consortium engaged SurveyEngine to support the validation of a cancer-specific HRQoL measure known as the QLU-C10D. We first managed qualitative and quantitative studies aimed at assessing the feasibility of employing a Discrete Choice Experiment (DCE) as a valuation study for the QLU-C10D1. This included programming the surveys, recruiting participants, overseeing qualitative interviews, and managing dataflow and cleaning. The flexibility of the SurveyEngine platform allowed these studies to achieve multiple measure-development goals, including a comparison of two presentation formats. Next, we programmed and managed studies to assess other properties of the measure, namely individual choice consistency and utility estimate consistency, using a test-retest study design2. Finally, we managed a study to verify the feasibility of having cancer patients complete a QLU-C10D DCE valuation study3. We utilized our expertise in recruiting challenging patient populations and ensuring regulatory compliance to ensure the success of this valuable study.


Step Two: Delivering Country-Specific Value Sets
Beyond tool validation, our collaboration extended to establishing country-specific value sets for over 13 countries4-14. These value sets provide the foundation for informed decision making tailored to specific cultural contexts. In the course of these studies, we leaned on our extensive experience collecting and quality-checking data to deliver datasets representative of each country’s population. Through our detailed project oversight, we maintained methodological consistency across borders, ensuring the reliability and comparability of our findings.

References

Norman, R., Viney, R., Aaronson, N. K., Brazier, J. E., Cella, D., Costa, D. S., Fayers, P. M., Kemmler, G., Peacock, S., Pickard, A. S., Rowen, D., Street, D. J., Velikova, G., Young, T. A., & King, M. T. (2016). Using a discrete choice experiment to value the QLU-C10D: feasibility and sensitivity to presentation format. Quality of life research, 25(3), 637–649. https://doi.org/10.1007/s11136-015-1115-3

Gamper, E. M., Holzner, B., King, M. T., Norman, R., Viney, R., Nerich, V., & Kemmler, G. (2018). Test-Retest Reliability of Discrete Choice Experiment for Valuations of QLU-C10D Health States. Value in health, 21(8), 958–966. https://doi.org/10.1016/j.jval.2017.11.012

Gamper, E., Holzner, B., King, M. T., Norman, R., & Kemmler, G. (2016). Trading-Off Quality of Life and Survival Time–Feasibility of Web-Based Discrete Choice Experiments For QLU-C10D Utility Elicitation in Cancer Patients. Value in Health, 19(7), A746. https://doi.org/10.1016/j.jval.2016.09.2284

King, M. T., Viney, R., Simon Pickard, A., Rowen, D., Aaronson, N. K., Brazier, J. E., Cella, D., Costa, D. S. J., Fayers, P. M., Kemmler, G., McTaggart-Cowen, H., Mercieca-Bebber, R., Peacock, S., Street, D. J., Young, T. A., Norman, R., & MAUCa Consortium (2018). Australian Utility Weights for the EORTC QLU-C10D, a Multi-Attribute Utility Instrument Derived from the Cancer-Specific Quality of Life Questionnaire, EORTC QLQ-C30. PharmacoEconomics, 36(2), 225–238. https://doi.org/10.1007/s40273-017-0582-5

Norman, R., Mercieca-Bebber, R., Rowen, D., Brazier, J. E., Cella, D., Pickard, A. S., Street, D. J., Viney, R., Revicki, D., King, M. T., & European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group and the MAUCa Consortium (2019). U.K. utility weights for the EORTC QLU-C10D. Health economics, 28(12), 1385–1401. https://doi.org/10.1002/hec.3950

McTaggart-Cowan, H., King, M. T., Norman, R., Costa, D. S. J., Pickard, A. S., Regier, D. A., Viney, R., & Peacock, S. J. (2019). The EORTC QLU-C10D: The Canadian Valuation Study and Algorithm to Derive Cancer-Specific Utilities From the EORTC QLQ-C30. MDM policy & practice, 4(1), 2381468319842532. https://doi.org/10.1177/2381468319842532

Kemmler, G., Gamper, E., Nerich, V., Norman, R., Viney, R., Holzner, B., King, M., & European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (2019). German value sets for the EORTC QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 28(12), 3197–3211. https://doi.org/10.1007/s11136-019-02283-w

Nerich, V., Gamper, E. M., Norman, R., King, M., Holzner, B., Viney, R., & Kemmler, G. (2021). French Value-Set of the QLU-C10D, a Cancer-Specific Utility Measure Derived from the QLQ-C30. Applied health economics and health policy, 19(2), 191–202. https://doi.org/10.1007/s40258-020-00598-1

Gamper, E. M., King, M. T., Norman, R., Efficace, F., Cottone, F., Holzner, B., Kemmler, G., & European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (2020). EORTC QLU-C10D value sets for Austria, Italy, and Poland. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 29(9), 2485–2495. https://doi.org/10.1007/s11136-020-02536-z

Jansen, F., Verdonck-de Leeuw, I. M., Gamper, E., Norman, R., Holzner, B., King, M., Kemmler, G., & European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (2021). Dutch utility weights for the EORTC cancer-specific utility instrument: the Dutch EORTC QLU-C10D. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 30(7), 2009–2019. https://doi.org/10.1007/s11136-021-02767-8

Xu, R. H., Wong, E. L., Luo, N., Norman, R., Lehmann, J., Holzner, B., King, M. T., Kemmler, G., & EORTC QLG (2023). The EORTC QLU-C10D: the Hong Kong valuation study. The European journal of health economics : HEPAC : health economics in prevention and care, 10.1007/s10198-023-01632-4. Advance online publication. https://doi.org/10.1007/s10198-023-01632-4

Revicki, D. A., King, M. T., Viney, R., Pickard, A. S., Mercieca-Bebber, R., Shaw, J. W., Müller, F., & Norman, R. (2021). United States Utility Algorithm for the EORTC QLU-C10D, a Multiattribute Utility Instrument Based on a Cancer-Specific Quality-of-Life Instrument. Medical decision making : an international journal of the Society for Medical Decision Making, 41(4), 485–501. https://doi.org/10.1177/0272989X211003569

Finch, A. P., Gamper, E., Norman, R., Viney, R., Holzner, B., King, M., Kemmler, G., & EORTC Quality of Life Group (2021). Estimation of an EORTC QLU-C10 Value Set for Spain Using a Discrete Choice Experiment. PharmacoEconomics, 39(9), 1085–1098. https://doi.org/10.1007/s40273-021-01058-x

Lehmann, J., Rojas-Concha, L., Petersen, M. A., Holzner, B., Norman, R., King, M. T., Kemmler, G., & EORTC Quality of Life Group (2024). Danish value sets for the EORTC QLU-C10D utility instrument. Quality of life research, 33(3), 831–841. https://doi.org/10.1007/s11136-023-03569-w

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