Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study.

Autor: van Balen EC; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands., Hassan S; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands., Smit C; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands., Driessens MHE; Netherlands Hemophilia Society (NVHP) Nijkerk The Netherlands., Beckers EAM; Department of Hematology Maastricht University Medical Centre Maastricht The Netherlands., Coppens M; Department of Vascular Medicine Amsterdam Cardiovascular Sciences Amsterdam UMC University of Amsterdam Amsterdam The Netherlands., Eikenboom JC; Department of Internal Medicine Division of Thrombosis and Hemostasis Leiden University Medical Center Leiden The Netherlands., Hooimeijer HL; Department of Paediatrics University Medical Center Groningen Groningen The Netherlands., Leebeek FWG; Department of Hematology Erasmus University Medical Center Erasmus MC Rotterdam The Netherlands., Mauser-Bunschoten EP; Center for Benign Haematology Thrombosis and Haemostasis Van Creveldkliniek University Medical Center Utrecht University Utrecht Utrecht The Netherlands., van Vulpen LFD; Center for Benign Haematology Thrombosis and Haemostasis Van Creveldkliniek University Medical Center Utrecht University Utrecht Utrecht The Netherlands., Schols SEM; Department of Hematology Radboud university medical center Nijmegen The Netherlands.; Hemophilia Treatment Center Nijmegen-Eindhoven-Maastricht Nijmegen The Netherlands., Rosendaal FR; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands., van der Bom JG; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands.; Center for Clinical Transfusion Research Sanquin Research/LUMC Leiden The Netherlands., Gouw SC; Department of Clinical Epidemiology Leiden University Medical Center The Netherlands.; Pediatric Hematology Emma Children's Hospital Amsterdam UMC University of Amsterdam Amsterdam The Netherlands.
Jazyk: angličtina
Zdroj: Research and practice in thrombosis and haemostasis [Res Pract Thromb Haemost] 2022 Aug 26; Vol. 6 (6), pp. e12741. Date of Electronic Publication: 2022 Aug 26 (Print Publication: 2022).
DOI: 10.1002/rth2.12741
Abstrakt: 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.
(© 2022 The Authors. Research and Practice in Thrombosis and Haemostasis published by Wiley Periodicals LLC on behalf of International Society on Thrombosis and Haemostasis (ISTH).)
Databáze: MEDLINE
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