Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study
Abstract Background and objectives Treatment availability and comprehensive care have resulted in improved clinical outcomes for persons with hemophilia. Recent data on socioeconomic participation in the Netherlands are lacking. This study assessed participation in education, in the labor market, an...
| Main Authors: | , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2022-08-01
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| Series: | Research and Practice in Thrombosis and Haemostasis |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/rth2.12741 |
| _version_ | 1797760796712763392 |
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| author | Erna C. van Balen Shermarke Hassan Cees Smit Mariette H. E. Driessens Erik A. M. Beckers Michiel Coppens Jeroen C. Eikenboom Hélène L. Hooimeijer Frank W. G. Leebeek Evelien P. Mauser‐Bunschoten Lize F. D. van Vulpen Saskia E. M. Schols Frits R. Rosendaal Johanna G. van der Bom Samantha C. Gouw |
| author_facet | Erna C. van Balen Shermarke Hassan Cees Smit Mariette H. E. Driessens Erik A. M. Beckers Michiel Coppens Jeroen C. Eikenboom Hélène L. Hooimeijer Frank W. G. Leebeek Evelien P. Mauser‐Bunschoten Lize F. D. van Vulpen Saskia E. M. Schols Frits R. Rosendaal Johanna G. van der Bom Samantha C. Gouw |
| author_sort | Erna C. van Balen |
| collection | DOAJ |
| description | Abstract Background and objectives Treatment availability and comprehensive care have resulted in improved clinical outcomes for persons with hemophilia. Recent data on socioeconomic participation in the Netherlands are lacking. This study assessed participation in education, in the labor market, and social participation for persons with hemophilia compared with the general male population. Methods Dutch adults and children (5–75 years) of all hemophilia severities (n = 1009) participated in a questionnaire study that included sociodemographic, occupational, and educational variables. Clinical characteristics were extracted from electronic medical records. General population data were extracted from Statistics Netherlands. Social participation was assessed with the PROMIS Ability to Participate in Social Roles and Activities short form, with a minimal important difference set at 1.0. Results Data from 906 adults and children were analyzed. Participation in education of 20 to 24 year olds was 68% (general male population: 53%). Educational attainment was higher compared with Dutch males, especially for severe hemophilia. Absenteeism from school was more common than in the general population. The employment‐to‐population ratio and occupational disability were worse for severe hemophilia than in the general population (64.3% vs. 73.2% and 14.7% vs. 4.8%, respectively), but similar for nonsevere hemophilia. Unemployment was 5.4% (general male population: 3.4%). Absenteeism from work was less common (38% vs. 45.2%). Mean PROMIS score was similar to or higher than in the general population (54.2; SD 8.9 vs. 50; SD 10). Conclusion Socioeconomic participation of persons with nonsevere hemophilia was similar to the general male population. Some participation outcomes for persons with severe hemophilia were reduced. |
| first_indexed | 2024-03-12T19:03:42Z |
| format | Article |
| id | doaj.art-db7a7b935ef64b20bf53ebae4067d4c0 |
| institution | Directory Open Access Journal |
| issn | 2475-0379 |
| language | English |
| last_indexed | 2024-03-12T19:03:42Z |
| publishDate | 2022-08-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Research and Practice in Thrombosis and Haemostasis |
| spelling | doaj.art-db7a7b935ef64b20bf53ebae4067d4c02023-08-02T06:26:02ZengElsevierResearch and Practice in Thrombosis and Haemostasis2475-03792022-08-0166n/an/a10.1002/rth2.12741Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands studyErna C. van Balen0Shermarke Hassan1Cees Smit2Mariette H. E. Driessens3Erik A. M. Beckers4Michiel Coppens5Jeroen C. Eikenboom6Hélène L. Hooimeijer7Frank W. G. Leebeek8Evelien P. Mauser‐Bunschoten9Lize F. D. van Vulpen10Saskia E. M. Schols11Frits R. Rosendaal12Johanna G. van der Bom13Samantha C. Gouw14Department of Clinical Epidemiology Leiden University Medical Center The NetherlandsDepartment of Clinical Epidemiology Leiden University Medical Center The NetherlandsDepartment of Clinical Epidemiology Leiden University Medical Center The NetherlandsNetherlands Hemophilia Society (NVHP) Nijkerk The NetherlandsDepartment of Hematology Maastricht University Medical Centre Maastricht The NetherlandsDepartment of Vascular Medicine Amsterdam Cardiovascular Sciences Amsterdam UMC University of Amsterdam Amsterdam The NetherlandsDepartment of Internal Medicine Division of Thrombosis and Hemostasis Leiden University Medical Center Leiden The NetherlandsDepartment of Paediatrics University Medical Center Groningen Groningen The NetherlandsDepartment of Hematology Erasmus University Medical Center Erasmus MC Rotterdam The NetherlandsCenter for Benign Haematology Thrombosis and Haemostasis Van Creveldkliniek University Medical Center Utrecht University Utrecht Utrecht The NetherlandsCenter for Benign Haematology Thrombosis and Haemostasis Van Creveldkliniek University Medical Center Utrecht University Utrecht Utrecht The NetherlandsDepartment of Hematology Radboud university medical center Nijmegen The NetherlandsDepartment of Clinical Epidemiology Leiden University Medical Center The NetherlandsDepartment of Clinical Epidemiology Leiden University Medical Center The NetherlandsDepartment of Clinical Epidemiology Leiden University Medical Center The NetherlandsAbstract Background and objectives Treatment availability and comprehensive care have resulted in improved clinical outcomes for persons with hemophilia. Recent data on socioeconomic participation in the Netherlands are lacking. This study assessed participation in education, in the labor market, and social participation for persons with hemophilia compared with the general male population. Methods Dutch adults and children (5–75 years) of all hemophilia severities (n = 1009) participated in a questionnaire study that included sociodemographic, occupational, and educational variables. Clinical characteristics were extracted from electronic medical records. General population data were extracted from Statistics Netherlands. Social participation was assessed with the PROMIS Ability to Participate in Social Roles and Activities short form, with a minimal important difference set at 1.0. Results Data from 906 adults and children were analyzed. Participation in education of 20 to 24 year olds was 68% (general male population: 53%). Educational attainment was higher compared with Dutch males, especially for severe hemophilia. Absenteeism from school was more common than in the general population. The employment‐to‐population ratio and occupational disability were worse for severe hemophilia than in the general population (64.3% vs. 73.2% and 14.7% vs. 4.8%, respectively), but similar for nonsevere hemophilia. Unemployment was 5.4% (general male population: 3.4%). Absenteeism from work was less common (38% vs. 45.2%). Mean PROMIS score was similar to or higher than in the general population (54.2; SD 8.9 vs. 50; SD 10). Conclusion Socioeconomic participation of persons with nonsevere hemophilia was similar to the general male population. Some participation outcomes for persons with severe hemophilia were reduced.https://doi.org/10.1002/rth2.12741absenteeismcareer choicedisability evaluationeducational statusemploymenthemophilia A |
| spellingShingle | Erna C. van Balen Shermarke Hassan Cees Smit Mariette H. E. Driessens Erik A. M. Beckers Michiel Coppens Jeroen C. Eikenboom Hélène L. Hooimeijer Frank W. G. Leebeek Evelien P. Mauser‐Bunschoten Lize F. D. van Vulpen Saskia E. M. Schols Frits R. Rosendaal Johanna G. van der Bom Samantha C. Gouw Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study Research and Practice in Thrombosis and Haemostasis absenteeism career choice disability evaluation educational status employment hemophilia A |
| title | Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study |
| title_full | Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study |
| title_fullStr | Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study |
| title_full_unstemmed | Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study |
| title_short | Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study |
| title_sort | socioeconomic participation of persons with hemophilia results from the sixth hemophilia in the netherlands study |
| topic | absenteeism career choice disability evaluation educational status employment hemophilia A |
| url | https://doi.org/10.1002/rth2.12741 |
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