Psychosocial Department, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Department of Vascular Medicine, Amsterdam Cardiovascular Sciences, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Haemophilia. 2019 May;25(3):e138-e145. doi: 10.1111/hae.13698. Epub 2019 Mar 12.
Suboptimal 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.
Young 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.
Ninety-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.
Three-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.
在荷兰之前的一项针对年轻成年人（YA）先天性凝血障碍（CCD）的研究中发现，他们的健康相关生活质量不佳且就业率较低，这强调了需要更深入地了解 YA 患有 CCD 的职业功能以及职业功能的决定因素。
患有 CCD 的年轻成年人（18-30 岁）参加了一项横断面研究。使用工作生产力和活动障碍问卷（WPAI）评估职业功能。使用生活课程问卷（CoLQ）、儿科生活质量量表青年版（PedsQL_YA）、疾病认知问卷（ICQ）和血友病活动清单（HAL）评估潜在决定因素。在患有 CCD 的 YA 的完整样本中以及在患有血友病的 YA 男性中分别进行逻辑回归分析，以检查 WPAI 结果的决定因素。
94 名患有 CCD 的 YA（77 名男性；平均年龄 24.1 岁，标准差 3.5 和 17 名女性；平均年龄 24.5 岁，标准差 3.8）参加了研究。74%的 YA 受雇于有偿工作，平均每周工作 30 小时。其中，超过四分之一的人报告工作障碍。年龄较大和非严重型血友病（在患有血友病的 YA 男性样本中）与成功（有偿）就业相关。在患有 CCD 或血友病的 YA 中，没有任何变量与职业功能（表现为出勤和整体工作障碍）相关。
四分之三的患有 CCD 的 YA 成功找到了有偿工作。尽管缺勤率较低，但有有偿就业的 YA 需要关注，因为相当一部分人经历了工作障碍。
