Occupational integration of adults with severe haemophilia (INTHEMO): A study based on the FranceCoag registry

Abstract

Introduction Health of people with severe haemophilia (PwSH) improves thanks to the advancements in haemophilia care, giving them more opportunities in occupational integration. However, there is little literature on the occupational integration of PwSH. Objectives The main objective of our study was to assess the occupational integration of PwSH and to compare it with that of the general population. The secondary objective was to study the association between individual characteristics (sociodemographic, clinical and psycho‐behavioural) and occupational integration of PwSH. Methods A multicentre, non‐interventional, 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 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 Of 1262 eligible people, 588 were included. PwSH had a lower employment rate than the general population (standardized ratio, .85; 95% CI, .77–.94). There were more PwSH at tertiary education level than expected (standardized ratio, 1.38; 95% CI, 1.17–1.61). HIV infection, poor physical health and mental health concerns were associated with a higher risk of unemployment in PwSH. Conclusion Employment rate of PwSH is lower than that of the general population despite their higher education level. Target interventions focusing on determinants of difficult occupational integration could be helpful for PwSH.

Health and quality of life of patients with haemophilia: A national study of 124 Danish men

“…An important reason for these differences is to be found in the impact of HIV and Hep C on the haemophilia population from 1980 onwards. A recent French study of the occupational integration of adults with severe haemophilia found that PWH had better education but lower employment, 14 similar to the trends in our analyses. Our results concerning increased prevalence of hypertension has been reported in several earlier studies of hypertension among PWH 15–17 .…”

Gentherapie der Hämophilie: Empfehlung der Gesellschaft für Thrombose- und Hämostaseforschung (GTH)

“…11 • Participation in life: due to the burdens of therapy, physical limitations, and psychosocial consequences of the disease, the educational opportunities, free choice of occupation as well as sports and social activities are subject to limitations in patients with hemophilia. 12,13 Gene therapy has the potential to effect substantial improvements in PROs in the above-mentioned areas. Thus, consistently higher levels of the clotting factor could prevent the risk of severe bleedings and the development or progression of joint damage.…”

“…Participation in life: due to the burdens of therapy, physical limitations, and psychosocial consequences of the disease, the educational opportunities, free choice of occupation as well as sports and social activities are subject to limitations in patients with hemophilia. 12 13…”

“…Teilhabe: Aufgrund von Belastungen durch die Therapie, körperliche Einschränkungen und psychosoziale Folgen der Erkrankung sind Bildungschancen, freie Berufswahl sowie sportliche und soziale Aktivitäten bei Patienten mit Hämophilie Einschränkungen unterworfen. 12 13 …”