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Title: Investigating the added value of the EQ-5D-5L with two bolt-on items in patients with hemophilia
Authors: Xu, RH 
Dong, D
Luo, N
Yang, R
Liu, J
Zhang, S
Issue Date: Aug-2021
Source: Frontiers in medicine, Aug. 2021, v. 8, 707998
Abstract: Objective: This study examined the impact of adding two condition-specific bolt-on items to the EQ-5D-5L and assessed their psychometric properties in patients with hemophilia.
Methods: The data were obtained from a nationwide cross-sectional online survey of patients with hemophilia in China. Self-reported and proxy-reported data were analyzed separately. Ceiling effect, informativity, and discriminatory power of the EQ-5D-5L with two bolt-on items, dignity (DG), and bleeding (BL), were examined. Spearman's rank correlation (rho) was used to assess the associations of the EQ-5D-5L and two bolt-on items with the Hemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL) and SF-12. Multiple regression analysis was performed to evaluate the explained variance of the EQ-5D-5L and bolt-on items in predicting EQ-VAS scores.
Results: A total of 895 patients and 222 caregivers completed the questionnaire. The ceiling effect decreased from 1.9 to 0.6% and 5.9 to 0.9% when using the EQ-5D-5L and the EQ-5D-5L with two bolt-on items among participants with both self- and proxy-completed questionnaires. Both DG and BL were strongly correlated with Haem-A-QoL sum score [rho: DG = 0.64 (patient) vs. 0.66(proxy); BL = 0.49 (patient) vs. 0.31 (proxy)], SF-12 mental component [rho: DG = −0.36 (patient) vs. −0.41 (proxy); BL = −0.53 (patient) vs. −0.57(proxy)], and SF-12 physical component [rho: DG = −0.61 (patient) vs. −0.61 (proxy); BL = −0.35 (patient) vs. −0.39 (proxy)]. Known-group comparisons confirmed that the two bolt-on items had satisfactory discriminatory power. Multiple regression analysis indicated that adding two bolt-on items significantly increased the ability to predict EQ-VAS scores. The adjusted R2 increased by 8.2 and 8.8% for reports completed by the patients or patients' proxy respondents, respectively.
Conclusion: Adding the DG and BL bolt-on items can increase performance on the EQ-5D-5L in patients with hemophilia. A future valuation study will be carried out.
Keywords: Bolt-on items
EQ-5D
Health-related quality of life
Hemophilia
Psychometric properties
Publisher: Frontiers Research Foundation
Journal: Frontiers in medicine 
EISSN: 2296-858X
DOI: 10.3389/fmed.2021.707998
Rights: © 2021 Xu, Dong, Luo, Yang, Liu and Zhang. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
The following publication Xu RH, Dong D, Luo N, Yang R, Liu J and Zhang S (2021) Investigating the Added Value of the EQ-5D-5L With Two Bolt-On Items in Patients With Hemophilia. Front. Med. 8:707998 is available at https://doi.org/10.3389/fmed.2021.707998
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