Germini F, O’Callaghan S, Chai-Adisaksopha C, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A, investigators P. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study [abstract]. Res Pract Thromb Haemost. 2020;4(Suppl 1). https://abstracts.isth.org/abstract/association-between-aging-and-health-status-in-persons-leaving-with-hemophilia-and-controls-without-a-bleeding-disorder-insights-from-the-probe-study/. Accessed June 29, 2020.
Background and aim
People with hemophilia (PWH) have a life expectancy disadvantage as compared to the general population but little is known about the impact of ageing on health status and health-related quality of life (HRQL). The aims of this study were to assess the characteristics of the association between ageing, health status and HRQL in PWH and persons without hemophilia (PWOH).
Methods
A cross-sectional, multinational study was conducted as part of the Patient Reported Outcomes, Burdens and Experiences (PROBE) project. PWH and PWOH were included. Participants were asked to complete the PROBE questionnaire, which contains haemophilia-related, general health and HRQL questions. Measures of health status and HRQL were the PROBE score, the EQ-5D-5L utility index, and the EuroQol visual analog scale (EQ VAS) of global health. The association between these measures and the age of participants was explored using a multivariable generalized linear model adjusting for sex (all) and disease severity (PWH only) and stratifying by country.
Results
1264 PWH and 694 PWOH completed the questionnaire in 33 countries from June 2016 to December 2019. Study population demographics are reported in Table 1. Seven percent of the PWH and 12% of PWOH were aged ≥ 65 years. Multivariable analysis results are reported in Table 2. As expected, the EQ-5D utility index and EQ VAS did not show a variation with ageing in PWOH, while in PWH they were reduced respectively by 0.021 (95%CI 0.015 to 0.028) and 0.033 (95 CI 0.018 to 0.049) every 10 years. Aging was associated with a mean reduction in the PROBE score of 0.01 (95% confidence interval [CI] 0.003 to 0.016) every 10 years in PWOH. PWH showed an additional reduction in the PROBE score of 0.02 (95% CI 0.013 to 0.027) every 10 years.
Conclusions
Ageing is associated with a steeper decrease in health status and HRQL in PWH than in persons without bleeding disorders. PROBE is more sensitive than EQ5D in measuring the association of aging for the specific domains measured in both PWH and PWOH.
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