Skinner M, Noone D, Curtis R, Frick N, Germini F, Kucher A, Nichol M, O’Mahony B, Page D, Stonebraker J, Iorio A. P-019 (1035680) Relationship of EQ-5D Pain Domain and Bleeds – Insights from the PROBE Study. (2021), ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385
Introduction
Bleeding in people living with haemophilia (PWH) has a significant impact on Health-Related Quality of Life (HRQoL). This impact has been used in terms of disutilities in cost-effectiveness analysis. The aim was to assess the impact on overall HRQoL by severity for a bleed being reported in the last two weeks and assess the level of impact on outcomes.
Methods
Data collected between 2018-2021, was analyzed to determine the relationship of bleeding events being reported within the past two weeks and the PROBE and EQ-5D-5L utility scores. 1168 questionnaires from male PWH A and B ≥ Age 18 (mean[SD] age 41.1[14.5]), were collected in 50 countries. Descriptive analysis and generalised linear models were produced using Stata 13.
Results
The level of pain reported using the EQ-5D-5L pain domain increased across all severities when a PWH reported having a bleed in the past two weeks. Overall, the EQ-5D utility scores were 0.077 (p=0.029), 0.058 (p=0.087) and 0.092 (p< 0.001) higher for mild, moderate and severe patients, respectively, when a bleed was reported in the last two weeks. Using the PROBE score, they were 0.074 (p=0.074), 0.080 (p< 0.001) and 0.089 (p< 0.001) higher. Using a generalised linear model accounting for age, severity and current treatment regimen the disutility associated with a bleed in the last 2 weeks was 0.08 (p< 0.001) for EQ-5D-5L and 0.086 (p< 0.001) for the PROBE score.
Conclusion
Bleeding has a significant impact on PWH HRQoL. A disutility in HRQoL measured by the EQ-5D and PROBE score is evident even two-weeks after a bleeding event. The temporal limitations of the EQ-5D may mask the length of impact of bleeding events unless the context of recent bleeding events is considered. The resulting utility scores may lead to a misrepresentation of the true impact of pain within the severe haemophilia population.
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