Professional functioning of young adults with congenital coagulation disorders in the Netherlands

Abstract

Introduction and AimSuboptimal health‐related quality of life and lowered employment rates found in a previous study in young adults (YA) with congenital coagulation disorders (CCD) in the Netherlands underline the need for more insight into professional functioning of YA with CCD and into determinants of professional functioning.MethodsYoung adults (18‐30 years) with CCD participated in a cross‐sectional study. Professional functioning was assessed with the Work Productivity and Activity Impairment questionnaire (WPAI). Potential determinants were assessed with the Course of Life Questionnaire (CoLQ), Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA), Illness Cognition Questionnaire (ICQ) and Haemophilia Activities List (HAL). Logistic regression analyses were performed in the complete sample of YA with CCD, and in YA men with haemophilia separately, to examine determinants of WPAI outcomes.ResultsNinety‐four YA (77 men; mean age 24.1 years, SD 3.5 and 17 women; mean age 24.5 years, SD 3.8) with CCD (74% haemophilia A/B) participated. 74.5% of YA were paid employed for on average 30 hours per week. Of these, more than a quarter reported work impairment. Older age and a non‐severe type of haemophilia (in the sample of YA men with haemophilia) were associated with successful (paid) employment. No variables were associated with professional functioning (expressed as Presenteeism and Overall work impairment) in patients with CCD or haemophilia.ConclusionThree‐quarters of YA with CCD were successful in finding paid employment. Though absenteeism was low, YA with paid employment needs attention as a considerable part experienced work impairment.

Clinical attributes and treatment characteristics are associated with work productivity and activity impairment in people with severe haemophilia A

“…Recently, a study by Limperg et al . suggested that WPL was not associated with clinical factors in a small cohort of young adults with CCDs 25 . Contrasting findings may be due to levels of specificity around the disease being studied (HA vs any CCD), severity (severe HA vs all severities of CCD) and mean age (37 vs 24 years) 25 .…”

“…25 Contrasting findings may be due to levels of specificity around the disease being studied (HA vs any CCD), severity (severe HA vs all severities of CCD) and mean age (37 vs 24 years). 25 For example, young adults with CCDs experience reduced rates of missed working time and reduced rates of work impairment when compared to WPAI outcomes assessed in adults with other chronic diseases such as axial spondyloarthritis. 22,25 Of note, the present study cohort may be more 10%-40%…”

“…25 For example, young adults with CCDs experience reduced rates of missed working time and reduced rates of work impairment when compared to WPAI outcomes assessed in adults with other chronic diseases such as axial spondyloarthritis. 22,25 Of note, the present study cohort may be more 10%-40%…”

“…[20][21][22][23] Few studies are published using the WPAI in people with haemophilia. 15,24,25 A recent study of young adult PWSHA across Europe found high WPL even with lifelong prophylaxis. 15 In a Dutch cohort of young adults with congenital coagulation disorders (CCDs), WPL was not statistically associated with clinical characteristics, physical functioning or illness cognitions (helplessness, acceptance); AI was not evaluated.…”

Factor analysis of the Korean version of the Illness Cognition Questionnaire for adolescents with chronic illness

“…Although the ICQ was originally developed for use in adults living with chronic diseases, it also has been used with adolescents with chronic illness (Bode, van der Heij, Taal, & van de Laar, 2010; de Neve‐Enthoven et al, 2016; Limperg et al, 2019). For example, ICQ was used for participants older than 12 years to investigate self‐esteem in patients with rheumatic disease; the Cronbach alpha range was .82–.88 (Bode et al, 2010).…”