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Gepubliceerd in: Quality of Life Research 5/2022

30-11-2021

Mapping the Haem-A-QoL to the EQ-5D-5L in patients with hemophilia

Auteurs: Richard Huan Xu, Dong Dong, Nan Luo, Eliza Lai-Yi Wong, Renchi Yang, Junshuai Liu, Huiqin Yuan, Shuyang Zhang

Gepubliceerd in: Quality of Life Research | Uitgave 5/2022

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Abstract

Objective

This study’s objective was to develop an algorithm that mapping the Haem-A-QoL scores to EQ-5D-5L utility scores in patients with hemophilia in China.

Methods

A national sample of 862 patients with hemophilia completed both the EQ-5D-5L and Haem-A-QoL instruments. Eight regression models were selected to develop the mapping algorithm, they were: the ordinary least squares, general linear regression, Tobit regression, censored least absolute deviation, mixture beta regression, adjusted limited dependent variable mixture, the two-part, and robust MM-estimator model. Root mean squared error (RMSE), mean absolute error (MAE), and R-square (R2) calculated using the tenfold cross-validation and random sample validation methods were used to assess the predictive ability of the models.

Results

Based on RMSE, MAE, and R2, the mixture beta regression model with selected Haem-A-QoL subscale scores as the predicted variables showed the best performance.

Conclusions

Our mapping algorithm bolsters the calculation of QALYs while conducting an economic evaluation of hemophilia-related interventions when only Haem-A-QoL data are available. The external validity of the algorithm should be further assessed in the other populations.
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Literatuur
4.
go back to reference Mulder, K., & Llinas, A. (2004). The target joint. Haemophilia, 10, 152–156.CrossRef Mulder, K., & Llinas, A. (2004). The target joint. Haemophilia, 10, 152–156.CrossRef
5.
go back to reference Trindade, G. C., Viggiano, L. G. de L., Brant, E. R., Lopes, C. A. de O., Faria, M. L. de, Ribeiro, P. H. N. de S., … Pinheiro, M. de B. (2019). Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires. Hematology, Transfusion and Cell Therapy, 41(4), 335–341 Trindade, G. C., Viggiano, L. G. de L., Brant, E. R., Lopes, C. A. de O., Faria, M. L. de, Ribeiro, P. H. N. de S., … Pinheiro, M. de B. (2019). Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires. Hematology, Transfusion and Cell Therapy, 41(4), 335–341
6.
go back to reference Limperg, P. F., Terwee, C. B., Young, N. L., Price, V. E., Gouw, S. C., Peters, M., … Haverman, L. (2017). Health-related quality of life questionnaires in individuals with haemophilia: A systematic review of their measurement properties. Haemophilia, 23(4), 497–510. Limperg, P. F., Terwee, C. B., Young, N. L., Price, V. E., Gouw, S. C., Peters, M., … Haverman, L. (2017). Health-related quality of life questionnaires in individuals with haemophilia: A systematic review of their measurement properties. Haemophilia, 23(4), 497–510.
8.
go back to reference Varaklioti, A., Kontodimopoulos, N., Katsarou, O., & Niakas, D. (2014). Psychometric properties of the Greek Haem-A-QoL for measuring quality of life in Greek haemophilia patients. BioMed Research International. Varaklioti, A., Kontodimopoulos, N., Katsarou, O., & Niakas, D. (2014). Psychometric properties of the Greek Haem-A-QoL for measuring quality of life in Greek haemophilia patients. BioMed Research International.
11.
go back to reference Grosse, S. D., Chaugule, S. S., & Hay, J. W. (2014). Estimates of utility weights in hemophilia: Implications for cost-utility analysis of clotting factor prophylaxis. Expert Review of Pharmacoeconomics & Outcomes Research, 15(2), 267–283.CrossRef Grosse, S. D., Chaugule, S. S., & Hay, J. W. (2014). Estimates of utility weights in hemophilia: Implications for cost-utility analysis of clotting factor prophylaxis. Expert Review of Pharmacoeconomics & Outcomes Research, 15(2), 267–283.CrossRef
12.
go back to reference Memari, K. (2019). A comparison of generic and disease-specific health-related quality of life measures in hemophilia patients: An online study. University of Minnesota. Memari, K. (2019). A comparison of generic and disease-specific health-related quality of life measures in hemophilia patients: An online study. University of Minnesota.
13.
go back to reference Carroll, L., Benson, G., Lambert, J., Benmedjahed, K., Zak, M., & Lee, X. Y. (2019). Real-world utilities and health-related quality-of-life data in hemophilia patients in France and the United Kingdom. Patient Preference and Adherence, 13, 941–957.CrossRef Carroll, L., Benson, G., Lambert, J., Benmedjahed, K., Zak, M., & Lee, X. Y. (2019). Real-world utilities and health-related quality-of-life data in hemophilia patients in France and the United Kingdom. Patient Preference and Adherence, 13, 941–957.CrossRef
23.
go back to reference Abdin, E., Subramaniam, M., Vaingankar, J. A., Luo, N., & Chong, S. A. (2013). Measuring health-related quality of life among adults in Singapore: Population norms for the EQ-5D. Quality of Life Research, 22(10), 2983–2991.CrossRef Abdin, E., Subramaniam, M., Vaingankar, J. A., Luo, N., & Chong, S. A. (2013). Measuring health-related quality of life among adults in Singapore: Population norms for the EQ-5D. Quality of Life Research, 22(10), 2983–2991.CrossRef
24.
go back to reference Reenen, M. Van, & Janssen, B. (2015). EQ-5D-5L User Guide - Basic information on how to use the EQ-5D-5L instrument. EuroQol Research Foundation. Reenen, M. Van, & Janssen, B. (2015). EQ-5D-5L User Guide - Basic information on how to use the EQ-5D-5L instrument. EuroQol Research Foundation.
26.
go back to reference Mackensen, S. V., & Gringeri, A. (2004). Development and pilot testing of a disease-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL). Blood, 104(11), 608A-609A.CrossRef Mackensen, S. V., & Gringeri, A. (2004). Development and pilot testing of a disease-specific quality of life questionnaire for adult patients with haemophilia (Haem-A-QoL). Blood, 104(11), 608A-609A.CrossRef
29.
go back to reference DeVellis, R. F. (2017). Scale development : Theory and applications (4th ed.). SAGE. DeVellis, R. F. (2017). Scale development : Theory and applications (4th ed.). SAGE.
30.
go back to reference Wailoo, A. J., Hernandez-Alava, M., Manca, A., Mejia, A., Ray, J., Crawford, B., … Busschbach, J. (2017). Mapping to estimate health-state utility from non–preference-based outcome measures: An ISPOR good practices for outcomes research task force report. Value Health, 20(1), 18–27. https://doi.org/10.1016/j.jval.2016.11.006 Wailoo, A. J., Hernandez-Alava, M., Manca, A., Mejia, A., Ray, J., Crawford, B., … Busschbach, J. (2017). Mapping to estimate health-state utility from non–preference-based outcome measures: An ISPOR good practices for outcomes research task force report. Value Health, 20(1), 18–27. https://​doi.​org/​10.​1016/​j.​jval.​2016.​11.​006
33.
go back to reference Powell, J. L. (1984). Least absolute deviations estimation for the censored regression model. Journal of econometrics, 25(3), 303–325.CrossRef Powell, J. L. (1984). Least absolute deviations estimation for the censored regression model. Journal of econometrics, 25(3), 303–325.CrossRef
34.
go back to reference Wu, M., Brazier, J. E., Kearns, B., Relton, C., Smith, C., & Cooper, C. L. (2014). Examining the impact of 11 long-standing health conditions on health- related quality of life using the EQ-5D in a general population sample. European Journal of Health Economics, 16, 141–151. https://doi.org/10.1007/s10198-013-0559-zCrossRef Wu, M., Brazier, J. E., Kearns, B., Relton, C., Smith, C., & Cooper, C. L. (2014). Examining the impact of 11 long-standing health conditions on health- related quality of life using the EQ-5D in a general population sample. European Journal of Health Economics, 16, 141–151. https://​doi.​org/​10.​1007/​s10198-013-0559-zCrossRef
36.
go back to reference Gray, L. A., & Alava, M. H. (2018). A command for fitting mixture regression models for bounded dependent variables using the beta distribution. Stata Journal, 18(1), 51–7500.CrossRef Gray, L. A., & Alava, M. H. (2018). A command for fitting mixture regression models for bounded dependent variables using the beta distribution. Stata Journal, 18(1), 51–7500.CrossRef
37.
go back to reference Alava, M. H., & Wailoo, A. (2015). Fitting adjusted limited dependent variable mixture models to EQ-5D. Stata Journal, 15(3), 737–750.CrossRef Alava, M. H., & Wailoo, A. (2015). Fitting adjusted limited dependent variable mixture models to EQ-5D. Stata Journal, 15(3), 737–750.CrossRef
51.
go back to reference Blome, C., Blome, C., Beikert, F. C., Beikert, F. C., Rustenbach, S. J., Rustenbach, S. J., … Augustin, M. (2013). Mapping DLQI on EQ-5D in psoriasis: Transformation of skin-specific health-related quality of life into utilities. Archives of Dermatological Research, 305(3), 197–204. Blome, C., Blome, C., Beikert, F. C., Beikert, F. C., Rustenbach, S. J., Rustenbach, S. J., … Augustin, M. (2013). Mapping DLQI on EQ-5D in psoriasis: Transformation of skin-specific health-related quality of life into utilities. Archives of Dermatological Research, 305(3), 197–204.
52.
go back to reference Abdin, E., Abdin, E., Chong, S. A., Chong, S. A., Seow, E., Seow, E., … Subramaniam, M. (2019). Mapping the Positive and Negative Syndrome Scale scores to EQ-5D-5L and SF-6D utility scores in patients with schizophrenia. Quality of life research, 28(1), 177–186. Abdin, E., Abdin, E., Chong, S. A., Chong, S. A., Seow, E., Seow, E., … Subramaniam, M. (2019). Mapping the Positive and Negative Syndrome Scale scores to EQ-5D-5L and SF-6D utility scores in patients with schizophrenia. Quality of life research, 28(1), 177–186.
53.
go back to reference Khan, K. A., Madan, J. P., Petrou, S. P., & Lamb, S. E. (2014). Mapping between the roland morris questionnaire and generic preference-based measures. Value in Health, 17(6), 686–695.CrossRef Khan, K. A., Madan, J. P., Petrou, S. P., & Lamb, S. E. (2014). Mapping between the roland morris questionnaire and generic preference-based measures. Value in Health, 17(6), 686–695.CrossRef
54.
go back to reference Tsuchiya, A., Brazier, J., McColl, E., & Parkin, D. (2002). Deriving preference-based single indices from non-preference based condition-specific instruments: Converting AQLQ into EQ5D indices. HEDS Discussion Paper. Retrieved from http://eprints.whiterose.ac.uk/10952/ Tsuchiya, A., Brazier, J., McColl, E., & Parkin, D. (2002). Deriving preference-based single indices from non-preference based condition-specific instruments: Converting AQLQ into EQ5D indices. HEDS Discussion Paper. Retrieved from http://​eprints.​whiterose.​ac.​uk/​10952/​
55.
go back to reference Meregaglia, M., Whittal, A., Nicod, E., & Drummond, M. (2020). ‘Mapping’ health state utility values from non-preference-based measures: A systematic literature review in rare diseases. PharmacoEconomics, 38(6), 557–574.CrossRef Meregaglia, M., Whittal, A., Nicod, E., & Drummond, M. (2020). ‘Mapping’ health state utility values from non-preference-based measures: A systematic literature review in rare diseases. PharmacoEconomics, 38(6), 557–574.CrossRef
56.
go back to reference Gilbert, L., Paroskie, A., Gailani, D., Debaun, M. R., & Sidonio, R. F. (2015). Haemophilia A carriers experience reduced health-related quality of life. Haemophilia, 21(6), 761–765.CrossRef Gilbert, L., Paroskie, A., Gailani, D., Debaun, M. R., & Sidonio, R. F. (2015). Haemophilia A carriers experience reduced health-related quality of life. Haemophilia, 21(6), 761–765.CrossRef
57.
go back to reference Chai-Adisaksopha, C., Noone, D., Curtis, R., Frick, N., Nichol, M. B., Germini, F., … Iorio, A. (2021). Non-severe haemophilia: Is it benign?–Insights from the PROBE study. Haemophilia, 27, 17–24. Chai-Adisaksopha, C., Noone, D., Curtis, R., Frick, N., Nichol, M. B., Germini, F., … Iorio, A. (2021). Non-severe haemophilia: Is it benign?–Insights from the PROBE study. Haemophilia, 27, 17–24.
Metagegevens
Titel
Mapping the Haem-A-QoL to the EQ-5D-5L in patients with hemophilia
Auteurs
Richard Huan Xu
Dong Dong
Nan Luo
Eliza Lai-Yi Wong
Renchi Yang
Junshuai Liu
Huiqin Yuan
Shuyang Zhang
Publicatiedatum
30-11-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-03051-5

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