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患有综合性遗传性胸大动脉疾病患者及其亲属的生活质量:基于面试的定性研究

Gry Velvin1, Heidi Johansen2, Gunnbjørg Aune2

  • 1Research and Innovation Department, TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, Nesodden, Norway. Gry.velvin@sunnaas.no.

Orphanet journal of rare diseases
|January 9, 2025
PubMed
概括

综合性遗传性大动脉疾病 (sHTAD) 患者的生活质量通过整合患者对心理社会福祉和医疗保健经验的观点而得到改善. 需要进一步的研究来开发可验证的QoL仪器,反映这些以患者为中心的因素.

关键词:
洛伊斯·迪茨综合征 (Loeys Dietz综合征) 是一种疾病.马芬综合征是什么意思 马芬综合征是什么意思定性研究是一种定性研究.生活质量生活的质量.综合性遗传性胸腔大动脉疾病综合征血管 埃勒斯·丹洛斯综合征

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