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与肥厚型心肌病共存:患者的视角。

Living with hypertrophic cardiomyopathy: a patient's perspective.

机构信息

Medical consultant, HCM patient, Plymouth, MA 02360, USA.

Patient author.

出版信息

Future Cardiol. 2022 Jan;18(1):43-50. doi: 10.2217/fca-2021-0091. Epub 2021 Sep 17.

DOI:10.2217/fca-2021-0091
PMID:34533409
Abstract

Hypertrophic cardiomyopathy (HCM) is a complex disease characterized by thickening of the cardiac muscle. Common symptoms include chest pain, shortness of breath, palpitations, fatigue and syncope (fainting), which are often confused for other conditions. Clinical treatment focuses on the relief of symptoms with medical therapies, which provide adequate to more variable symptomatic relief. Patients may experience more severe complications that require surgical intervention, such as implantable cardioverter-defibrillator therapy or septal myectomy. Despite the potential impact on quality of life, the humanistic burden of HCM is not well established. Here, we present four patient testimonials that highlight challenges faced by patients and clinicians in diagnosing HCM and managing symptoms. These testimonials provide valuable information on the spectrum and expression of HCM across generations. Such testimonials can better inform disease diagnosis and monitoring, maximizing quality of life and improving disease outcome.

摘要

肥厚型心肌病(HCM)是一种以心肌肥厚为特征的复杂疾病。常见症状包括胸痛、呼吸急促、心悸、疲劳和晕厥(昏倒),这些症状常与其他疾病混淆。临床治疗侧重于通过药物治疗来缓解症状,这些治疗方法可提供充分至更可变的症状缓解。患者可能会出现更严重的并发症,需要手术干预,如植入式心脏复律除颤器治疗或室间隔心肌切除术。尽管 HCM 对生活质量有潜在影响,但 HCM 的人文负担尚未得到充分确立。在这里,我们呈现了四个患者的亲身体验,突出了诊断 HCM 和管理症状方面患者和临床医生所面临的挑战。这些亲身体验提供了有关 HCM 在各世代的表现和表达的宝贵信息。此类亲身体验可以更好地为疾病诊断和监测提供信息,最大限度地提高生活质量并改善疾病结局。

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Living with hypertrophic cardiomyopathy: a patient's perspective.与肥厚型心肌病共存:患者的视角。
Future Cardiol. 2022 Jan;18(1):43-50. doi: 10.2217/fca-2021-0091. Epub 2021 Sep 17.
2
Surgical septal myectomy decreases the risk for appropriate implantable cardioverter defibrillator discharge in obstructive hypertrophic cardiomyopathy.外科室间隔心肌切除术可降低梗阻性肥厚型心肌病患者植入式心律转复除颤器恰当放电的风险。
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[Hypertrophic cardiomyopathy].[肥厚型心肌病]
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Clinical Course and Quality of Life in High-Risk Patients With Hypertrophic Cardiomyopathy and Implantable Cardioverter-Defibrillators.肥厚型心肌病和植入式心脏复律除颤器高危患者的临床过程和生活质量。
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Patient understanding of disease and the use and outcome of implantable cardioverter defibrillators in hypertrophic cardiomyopathy.肥厚型心肌病患者对疾病的理解以及植入式心律转复除颤器的使用与疗效
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Improvement in Sexual Dysfunction in Patients With Hypertrophic Cardiomyopathy Undergoing Septal Myectomy: A Prospective Study.肥厚型心肌病患者行室间隔心肌切除术后性功能障碍的改善:一项前瞻性研究。
JACC Adv. 2023 Dec 13;3(1):100763. doi: 10.1016/j.jacadv.2023.100763. eCollection 2024 Jan.
2
Hypertrophic Cardiomyopathy: Genetic Foundations, Outcomes, Interconnections, and Their Modifiers.肥厚型心肌病:遗传基础、结局、相互关系及其修饰因素。
Medicina (Kaunas). 2023 Aug 4;59(8):1424. doi: 10.3390/medicina59081424.