Epistaxis limits the performed activities of daily living in proportion to its severity: a cross-sectional survey among patients with hereditary haemorrhagic telangiectasia

M. Hayama, Y. Maeda, T. Tsuda, H. Akazawa, A. Nakatani, S. Obata, K. Takeda, H. Inohara
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Abstract

Background: We examined the severity of epistaxis in patients with hereditary haemorrhagic telangiectasia (HHT) and its relationship with the performed activities of daily living. Methodology: This cross-sectional survey included 36 patients with HHT in Japan. An anonymous questionnaire survey was conducted regarding the severity of epistaxis, the measures adopted to prevent epistaxis, and the limitations in the performed activities of daily living. The latter was assessed using a visual analogue scale (VAS). The correlation between epistaxis severity and the VAS score was analysed using Spearman’s rank correlation coefficient. Results: Of the 36 participants surveyed, 94.4% had >1 episode of epistaxis/week. The mean epistaxis severity score (ESS) was 4.3 (range, 0.9–8.4). Limitations in daily life, going out (within a day), meeting with others, eating with others, and going on overnight trips were positively correlated with the ESS. To prevent nosebleeds, 44.4% and 41.7% of the participants used medications and avoided drying their nasal cavities, respectively. Conclusions: Epistaxis impacted the daily life of patients with HHT in proportion to its severity. Nonetheless, less than half of the patients used medications or took precautions. Hence, further educational activities should be considered for medical professionals and patients.
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鼻衄限制了其严重程度的日常生活活动:遗传性出血性毛细血管扩张患者的横断面调查
背景:我们研究了遗传性出血性毛细血管扩张症(HHT)患者鼻出血的严重程度及其与日常生活活动的关系。方法:这项横断面调查包括日本36名HHT患者。对鼻出血的严重程度、预防鼻出血的措施以及日常生活活动的局限性进行了匿名问卷调查。后者使用视觉模拟量表(VAS)进行评估。采用Spearman秩相关系数分析鼻出血严重程度与VAS评分之间的相关性。结果:在接受调查的36名参与者中,94.4%的人每周发生1次以上鼻出血。平均鼻出血严重程度评分(ESS)为4.3(范围为0.9-8.4)。日常生活的局限性、外出(一天内)、与他人会面、与他人一起吃饭和通宵旅行与ESS呈正相关。为了预防流鼻血,44.4%和41.7%的参与者分别使用了药物并避免鼻腔干燥。结论:鼻出血对HHT患者日常生活的影响与其严重程度成正比。尽管如此,只有不到一半的患者使用了药物或采取了预防措施。因此,应考虑为医疗专业人员和患者开展进一步的教育活动。
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