More bleeds can negatively affect life, work for men with Hem A
More annual bleeds linked to lower life quality, work productivity
More bleeding episodes may mean a lower quality of life and less productivity at work for men with hemophilia A living in Europe, according to an analysis of data from the CHESS II retrospective study.
The analysis, “The impact of bleeding event frequency on health-related quality of life and work productivity outcomes in a European cohort of adults with haemophilia A: insights from the CHESS II study,” was published in the Orphanet Journal of Rare Diseases.
Hemophilia A is a genetic disease that affects the ability of blood to clot properly. This means that people with hemophilia A are more likely to experience prolonged bleeding, even from minor injuries, which poses challenges to daily life.
UK researchers, Pfizer team up to analyze data from CHESS II study
To understand how bleeding affects the overall well-being and work productivity of men with hemophilia A, researchers in the U.K. teamed up with Pfizer employees to run an analysis of data from the CHESS II study.
This was a retrospective study that surveyed men with hemophilia A or B of any severity, with or without neutralizing antibodies against clotting factor concentrates (inhibitors), in eight European countries, between November 2018 and November 2020.
The analysis focused on data from 318 men with mild (18%), moderate (27%), or severe (55%) hemophilia A, ages 18 to 64 years, without inhibitors. The men lived in France, Germany, Italy, Spain, and the U.K., and their mean age was 33.8 years. Most (96%) were white.
More than half (57%) were employed full-time or part-time, or were self-employed. About 19% were students and some were either unemployed (6%) or physically unable to work due to hemophilia or its related complications (4%). Others were retired or homemakers.
Just over one-third (38%) received prophylactic (preventive) treatment and 42% received on-demand therapy.
A mean of 2.7 bleeding episodes had occurred over the previous year across the whole group. The number of annual bleeds increased with disease severity, from a mean of 1.1 for mild hemophilia A up to 2.2 for moderate and 3.5 for severe disease.
In total, 15% of patients reported having no bleeding episodes during this timeframe. About one-quarter each had one or two bleeding episodes, whereas 65 (20%) had three or four bleeding episodes, and 54 (17%) had five or more.
Quality of life was assessed with the EQ-5D-5L index, which looks at five aspects of health: mobility, self-care, usual activities, pain or discomfort, and anxiety or depression. A score of one indicates perfect health, while lower scores signal increasingly poorer health.
Mean EQ-5D-5L index scores decreased from 0.92 for patients with no bleeding episodes down to 0.56 for those who had experienced five or more bleeds over the previous year.
These findings suggested “a decline in overall [health-related quality of life] with an increasing number of bleeding events,” the researchers wrote.
Poorer self-rated health reported by patients with more annual bleeds
Self-rated quality of life was assessed with EQ-VAS, a visual analogue scale that takes values between 100 (best imaginable health) and 0 (worst imaginable health).
The mean EQ-VAS score was 86.9 points for patients with no bleeding episodes, and was much lower — 61.2 points — for those with five or more bleeds, “which indicates that poorer self-rated health was reported by patients with a greater number of [annual bleeds].”
Of the 180 patients who were employed, 171 had paid employment and were invited to provide information about work productivity on the Work Productivity and Activity Impairment: Specific Health Problems questionnaire.
The percentage of overall work productivity loss due to hemophilia ranged from a mean of 9.7% for patients with no bleeding episodes up to 47.7% for those with five or more bleeds.
These findings indicate that more severe hemophilia A is linked to reduced quality of life and work productivity, “which worsens with a greater number of [annual bleeds],” the researchers wrote.
“Treatment modalities that offer the potential for reduced [annual bleeds], along with consequent improvements in [health-related quality of life] and work productivity, may offer renewed hope for people with haemophilia A,” they wrote.
The CHESS II study was supported by pharmaceutical companies BioMarin, Sanofi, and Takeda. This analysis was sponsored by Pfizer.