P1672: occupational integration of adults with severe haemophilia (inthemo): a study based on the francecoag registry

Topic: 35. Quality of life and palliative care Background: Haemophilia is a rare and inherited disorder affecting mainly men, characterised by bleeding due to a deficiency in clotting factors. Untreated severe haemophilia is marked by serious haemorrhagic events (e.g., intracranial haemorrhage, hemoperitoneum, hemarthrosis). However, improvements in haemophilia care, such as substitutive therapies, allow people with severe haemophilia (PwSH) to have a near-normal life expectancy, so they can reach adulthood and live with a chronic disease. This gives them more opportunities in occupational integration. Aims: The primary objective was to assess the occupational integration of PwSH and to compare it with the reference values from the French general population (age- and sex-matched data). The secondary objective was to study the association between individual characteristics and occupational integration of PwSH. Methods: A multicentre, observational, cross-sectional study was conducted in 2018–2020 on PwSH, aged over 18 and under 65 years, and included in the FranceCoag registry. Measurements included indicators of occupational integration, sociodemographic, clinical and psycho-behavioural characteristics. The indicators of occupational integration were compared with those of the French general population using indirect standardization. The data of the general population were available from the National Institute of Statistics and Economic Studies (INSEE). Determinants of occupational integration were explored using structural equation modelling. Results: In total, there were 588 participants. Most of them were men (99.3% of all participants) and the mean (SD) age was 41.1 (12.9) years. Occupational integration of PwSH compared to the general population: The observed employment rate of PwSH was 61.6%, which was lower compared to the general population (standardized ratio (SR)=0.85; 95%CI=0.77-0.94). The rate of PwSH having no diploma or with primary/secondary education level was lower compared to the general population (SR=0.44; 95%CI=0.32-0.60), while the rate of university graduates was higher (SR=1.38; 95%CI=1.17-1.61). PwSH chose to do intellectual work more often than the general population (SR=1.79; 95%CI=1.49-2.14). Determinants of occupational integration in PwSH (Figure 1): PwSH with tertiary education level and PwSH with better physical health were more likely to be in employment (odds ratio (OR)=1.94; 95%CI=1.49–2.53 and OR=1.03; 95%CI=1.02–1.04, respectively), while PwSH with more mental health concerns and PwSH living with HIV were less likely to be in employment (OR=0.98; 95%CI=0.97–0.99 and OR=0.69; 95%CI=0.50–0.94, respectively). Current use of prophylaxis did not have direct effect on occupational integration, but it had a negative indirect effect through physical health and mental health concerns (OR=0.91; 95%CI=0.84–0.99).Figure 1. Outcomes of structural equation modelling for determinants of occupational integration in PwSH Associations with physical health and mental health concerns are presented by standardized coefficients (β). Effects on occupational integration are presented by odds ratios. Dashed arrows represent non-significance. Summary/Conclusion: The employment rate of PwSH was lower compared to the general population, whereas their education level was higher than expected. Deterioration in physical and mental health, as well as HIV infection, could be associated with difficult occupational integration and a decrease in employability. Health and high educational attainment are key factors to job opportunities for PwSH. More support programs targeting the determinants of employment are necessary to help PwSH overcome difficulties in occupational integration. Keywords: Hemophilia, Adult, Quality of life