Hemophilia prophylaxis tied to less disability-related unemployment
2022 report shows 18% of patients see job status affected
Prophylactic treatment for hemophilia can help people with the disease avoid unemployment due to disability, a study reports.
Hemophilia has a negative effect on a person’s employability. A 2022 global report by the World Federation of Hemophilia indicates about 18% of hemophilia patients see their employment status impacted by the disease, “forcing them into part-time employment, long-term sick leave, unemployment or retirement.”
Unemployment is prevalent among hemophilia patients due to disability caused by disease symptoms, but the main risk factors associated with job status haven’t been well studied, leading researchers in Norway to explore possible “associations between unemployment due to disability and treatment while adjusting for known risk factors for unemployment.” The results were published in Research and Practice in Thrombosis and Haemostasis in the article “The association between unemployment and treatment among adults with hemophilia.”
Researchers used data from the ADVANCE study, which investigates aging in the hemophilia population. The study involved 20 hemophilia centers across 15 European countries. By November 2018, 785 participants, aged 40 or older, with hemophilia A or hemophilia B were recruited.
Employment status was obtained for 756 participants, and their median age was 53. Most had hemophilia A (85%) and severe disease (56%). On-demand treatment was reported by 59% of patients, while prophylactic treatment was reported by 39%.
Preventive treatment’s effect on job status
Excluding 196 retired patients, an unemployment rate of 18.4% was found among 560 patients, with 11.4% being due to disability. This unemployment rate was up to 2.5 times higher than the 7.4% adjusted unemployment rate in the nondisabled general population in the Organisation for Economic Co-operation and Development (OECD), underscoring the labor market exclusion seen by people with hemophilia.
“Disability was the primary reason for unemployment for people with hemophilia,” wrote the researchers, who then looked only at participants with valid employment status (448 patients) at follow-up and found that most tended to maintain their initial employment condition. For example, of 227 patients who worked full-time, 186 (82%) remained so at follow-up.
The researchers also analyzed only the participants who received either prophylaxis — to prevent and lower the risk of bleeds — or on-demand treatment to control active bleeding episodes, and who were either unemployed due to disability or fully employed.
Patients with severe hemophilia were more likely to receive prophylactic treatment and less likely to be employed full time. Prophylaxis was less common among those with non-severe hemophilia.
A review of full-time employment versus unemployment showed data from 424 patients revealed a higher probability of unemployment due to disability was significantly associated with severe hemophilia, psychiatric disorders, being a smoker, and older. In contrast, those receiving prophylactic treatment had a significantly lower probability of unemployment due to disability. No relationship was found regarding the type of hemophilia.
Despite the challenges prophylactic therapy faces, including its higher cost over on-demand treatment, it’s the best therapeutic strategy for hemophilia patients due to its association with employability, results show.
“One must consider the benefits if treatment could imply employment and thus alleviate some of the hardships that people with hemophilia face,” the researchers said. “The primary benefit of prophylaxis lies in its ability to enhance quality of life, not only cost-effectiveness.”
Limitations of the study included possible confounding variables that affect the choice of treatment and employment status. The type of work patients did, manual labor or less strenuous activity, could directly impact disability.
The researchers said future studies should compare the costs of treatments against those of unemployment. The relationship between unemployment and reductions in quality of life and mental health, as well as the impact of prophylactic treatment in those areas, should be studied. “The consequences of unemployment in both living standards and psychological well-being can be great. How treatment and other risk factors may influence employment is important,” they said.
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