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 .…”

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 .…”

Clinical and Economic Burden of Patients With Haemophilia A and B in France: Analysis of a Nationwide Claims Database

“…A specific survey was conducted in 2018–2020 in France about the occupational integration of severe haemophilia patients. It showed that PWH had a lower employment rate than the general population despite a higher education level [15]. Another study suggested a higher unemployment rate among patients with HIV [16].…”

Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

“…Daily lives of these siblings may not be negatively impacted when their affected brother can manage well the disease. 2 From the results of the TRANSHEMO project, 3 approximately 96% of the affected adolescents adhered to healthcare. This could be an explanation for the good QoL of their siblings.…”

“…Ngoc Anh Thu Nguyen 1,2 Pascal Auquier 1,2,3 Any Beltran Anzola Roseline D'Oiron 3,15 Caroline Oudot-Challard 16 Karine Baumstarck 1,2,3 Mohamed Boucekine 1,2,3 Clémence Tabélé 1,2,3 Natacha Rosso-Delsemme 17,18 Thomas Sannié 19 Nicolas Giraud 19 Hervé Chambost 3,18 Noémie Resseguier 1,2 the FRATHEMO Study group…”

“…The main objective of the FRATHEMO project was to compare the QoL of the adolescents with severe haemophilia participating in the TRANSHEMO project 3 with that of their siblings. The secondary objectives were to compare the QoL of these siblings with the age-and sex-matched French normative data, and to identify the determinants of the siblings' QoL and associations between these determinants by two-level path analysis.…”

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 .…”

Clinical and Economic Burden of Patients With Haemophilia A and B in France: Analysis of a Nationwide Claims Database

“…A specific survey was conducted in 2018–2020 in France about the occupational integration of severe haemophilia patients. It showed that PWH had a lower employment rate than the general population despite a higher education level [15]. Another study suggested a higher unemployment rate among patients with HIV [16].…”

Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

“…Daily lives of these siblings may not be negatively impacted when their affected brother can manage well the disease. 2 From the results of the TRANSHEMO project, 3 approximately 96% of the affected adolescents adhered to healthcare. This could be an explanation for the good QoL of their siblings.…”

“…Ngoc Anh Thu Nguyen 1,2 Pascal Auquier 1,2,3 Any Beltran Anzola Roseline D'Oiron 3,15 Caroline Oudot-Challard 16 Karine Baumstarck 1,2,3 Mohamed Boucekine 1,2,3 Clémence Tabélé 1,2,3 Natacha Rosso-Delsemme 17,18 Thomas Sannié 19 Nicolas Giraud 19 Hervé Chambost 3,18 Noémie Resseguier 1,2 the FRATHEMO Study group…”

“…The main objective of the FRATHEMO project was to compare the QoL of the adolescents with severe haemophilia participating in the TRANSHEMO project 3 with that of their siblings. The secondary objectives were to compare the QoL of these siblings with the age-and sex-matched French normative data, and to identify the determinants of the siblings' QoL and associations between these determinants by two-level path analysis.…”

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 .…”

Clinical and Economic Burden of Patients With Haemophilia A and B in France: Analysis of a Nationwide Claims Database

“…A specific survey was conducted in 2018–2020 in France about the occupational integration of severe haemophilia patients. It showed that PWH had a lower employment rate than the general population despite a higher education level [15]. Another study suggested a higher unemployment rate among patients with HIV [16].…”

Quality of life of siblings of adolescents with severe haemophilia (FRATHEMO): An ancillary study to the TRANSHEMO project

“…Daily lives of these siblings may not be negatively impacted when their affected brother can manage well the disease. 2 From the results of the TRANSHEMO project, 3 approximately 96% of the affected adolescents adhered to healthcare. This could be an explanation for the good QoL of their siblings.…”

“…Ngoc Anh Thu Nguyen 1,2 Pascal Auquier 1,2,3 Any Beltran Anzola Roseline D'Oiron 3,15 Caroline Oudot-Challard 16 Karine Baumstarck 1,2,3 Mohamed Boucekine 1,2,3 Clémence Tabélé 1,2,3 Natacha Rosso-Delsemme 17,18 Thomas Sannié 19 Nicolas Giraud 19 Hervé Chambost 3,18 Noémie Resseguier 1,2 the FRATHEMO Study group…”

“…The main objective of the FRATHEMO project was to compare the QoL of the adolescents with severe haemophilia participating in the TRANSHEMO project 3 with that of their siblings. The secondary objectives were to compare the QoL of these siblings with the age-and sex-matched French normative data, and to identify the determinants of the siblings' QoL and associations between these determinants by two-level path analysis.…”