OBJECTIVE The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients. METHODS Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia. RESULTS Qualitative grounded theory analyses were performed using the participants' transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care. CONCLUSION The definition of quality of life that emerged from the participants' transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants' transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.

中文翻译：

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遗传性出血性毛细血管扩张和与健康有关的生活质量：定性研究。

目的本研究的目的是对遗传性出血性毛细血管扩张患者的健康相关生活质量进行准确描述。方法对遗传性出血性毛细血管扩张症患者进行了十三次半结构式访谈。结果使用参与者的笔录进行了定性的基础理论分析，发现了以下六类：身体症状对日常生活的影响，家庭和社会生活的质量，与疾病有关的情感和心理结果，患有严重疾病和应对的知识处理此类疾病的策略，专业同事和上级对疾病的认可以及医疗保健专业人士的知识和理解。结论从参与者的笔录中得出的生活质量的定义基本上与健康有关。遗传性出血性毛细血管扩张的个体主要集中于症状的生理，心理和情感影响及其对职业生活和社交活动的影响。参与者的笔录中也强调了家庭关系。因此，HHT患者使用应对策略来控制其疾病。最后，一个特别突出的问题是关于这种疾病的罕见性以及随之而来的固有误解感的缺乏知识。症状的心理和情感影响及其对职业生活和社交活动的影响。参与者的笔录中也强调了家庭关系。因此，HHT患者使用应对策略来控制其疾病。最后，一个特别突出的问题是关于这种疾病的罕见性以及随之而来的固有误解感的缺乏知识。症状的心理和情感影响及其对职业生活和社交活动的影响。参与者的笔录中也强调了家庭关系。因此，HHT患者使用应对策略来控制其疾病。最后，一个特别突出的问题是关于这种疾病的罕见性以及随之而来的固有误解感的缺乏知识。