II. Medical Department, Haemophilia Centre, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
Institute of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany.
Hamostaseologie. 2018 Aug;38(3):150-157. doi: 10.5482/HAMO-16-12-0047. Epub 2018 Sep 27.
The impact of inherited bleeding disorders on the socioeconomic status (SES) of affected individuals is not clear. The SES of adult patients with congenital bleeding disorders (PWBD) from a centre in Germany (age 42.3 ± 15.0 years) was compared to that of a gender- and age-matched control group of patients with thrombophilia or a thrombotic event (PWT). Patients completed a questionnaire including aspects of SES, impact of the disease on their lives, and health-related quality of life (HRQoL). Forty-five patients were enrolled in each group; 71 % of PBWD had a severe form of the bleeding disorder (FVIII/IX activity < 1 % or VWD type 3), and 60 % of all PWBD were treated on-demand. PWBD had a lower monthly income ( = 0.029) and a worse occupational status ( = 0.047) than PWT, but there was no difference regarding the project-specific SES index. PWBD also reported a worse HRQoL in the physical summary component score of the SF-36 ( < 0.001). More PWBD (69.8 %) reported a high impact of the disease on their lives than PWT (33.3 %, < 0.001). In summary, PWBD had a worse occupational status, monthly income, health behaviour, HRQoL, and impact of the disease on their lives compared to PWT, but not a significantly different SES in general.
遗传性出血性疾病对患者社会经济地位(SES)的影响尚不清楚。本研究比较了德国某中心的先天性出血性疾病(PWBD)成年患者(年龄 42.3±15.0 岁)与血栓形成倾向或血栓性事件患者(PWT)的 SES,后者为性别和年龄匹配的对照组。患者完成了一份 SES 方面、疾病对其生活的影响以及健康相关生活质量(HRQoL)的问卷。每组纳入 45 例患者;71%的 PBWD 为严重出血性疾病(FVIII/IX 活性<1%或 VWD 型 3),60%的所有 PWBD 按需治疗。PWBD 的月收入较低( = 0.029)和职业地位较差( = 0.047),但项目特异性 SES 指数无差异。PWBD 的 SF-36 身体总成分评分也较差( < 0.001)。更多的 PWBD(69.8%)报告疾病对其生活的影响较大,而 PWT 为 33.3%( < 0.001)。总之,与 PWT 相比,PWBD 的职业地位、月收入、健康行为、HRQoL 和疾病对其生活的影响较差,但 SES 总体上无显著差异。