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血友病对成年黎巴嫩血友病患者社会地位和健康相关生活质量的影响。

The impact of haemophilia on the social status and the health-related quality of life in adult Lebanese persons with haemophilia.

机构信息

Hotel Dieu de France Hospital, Saint Joseph University, Beirut, Lebanon.

Lebanese Association of Hemophilia, Jal El Dib, Lebanon.

出版信息

Haemophilia. 2019 Mar;25(2):264-269. doi: 10.1111/hae.13694. Epub 2019 Feb 12.

Abstract

INTRODUCTION

Health-related quality of life (HRQoL) studies are increasingly needed to prevent and improve the medical care of persons with haemophilia (PWH).

AIM

We assessed the impact of haemophilia on HRQoL and social status of adult Lebanese PWH compared to a reference population.

METHODS

In this case-control study, 60 severe and moderate PWH were compared to 112 healthy controls. Detailed socio-demographic data and disease characteristics were collected, and HRQoL was assessed using the SF-36 questionnaire.

RESULTS

Age, body mass index and the percentage of married people were similar in PWH and controls. A greater proportion of controls attained a higher educational level than cases (88.4% vs 59.3%, respectively, P < 0.001). PWH were more likely to have a job requiring physical activity than controls (55.9% vs 31.4%) and more likely to be unemployed (10.2% vs 1.0%), whereas more controls had higher socio-economic jobs (10.5% vs 1.7%). PWH had significantly (P < 0.001) worse scores in all SF-36 domains except for energy/fatigue. Affected targeted joints (2.7 ± 1.5) and monthly bleeding frequency (2.9 ± 2.4) were inversely correlated with almost all SF-36 domains. Only 26.7% of PWH walk normally, and walking abnormalities were inversely correlated with all SF-36 domains except role-emotional and emotional well-being.

CONCLUSION

As compared with controls, the majority of Lebanese PWH has difficulties in social integration, has severe physical limitations and psychological impairments.

摘要

简介

健康相关生活质量(HRQoL)研究越来越需要预防和改善血友病(PWH)患者的医疗保健。

目的

我们评估了与参考人群相比,黎巴嫩成年 PWH 的血友病对 HRQoL 和社会地位的影响。

方法

在这项病例对照研究中,将 60 名重度和中度 PWH 与 112 名健康对照进行了比较。收集了详细的社会人口统计学数据和疾病特征,并使用 SF-36 问卷评估了 HRQoL。

结果

PWH 和对照组的年龄、体重指数和已婚人数相似。与病例相比,对照组中受过高等教育的比例更高(分别为 88.4%和 59.3%,P<0.001)。PWH 更有可能从事需要体力活动的工作,而对照组则较少(分别为 55.9%和 31.4%),而且 PWH 失业的可能性更高(分别为 10.2%和 1.0%),而对照组中从事更高社会经济职业的比例更高(分别为 10.5%和 1.7%)。除了能量/疲劳外,PWH 在所有 SF-36 领域的得分都明显更差(P<0.001)。受影响的靶向关节(2.7±1.5)和每月出血频率(2.9±2.4)与几乎所有 SF-36 领域呈负相关。只有 26.7%的 PWH 能正常行走,行走异常与除了角色情感和情感健康之外的所有 SF-36 领域呈负相关。

结论

与对照组相比,大多数黎巴嫩 PWH 在社会融合方面存在困难,身体活动严重受限,心理受损。

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