Institute for Healthcare Policy & Innovation, University of Michigan, Ann Arbor, Michigan, USA
Department of Internal Medicine, Division of Cardiovascular Medicine, University of Michigan Medical School, Ann Arbor, Michigan, USA.
BMJ Open. 2024 Sep 17;14(9):e081323. doi: 10.1136/bmjopen-2023-081323.
Hypertrophic cardiomyopathy (HCM), including obstructive HCM (oHCM), is the most common inherited cardiomyopathy causing lifestyle-limiting symptoms. Data are lacking about patients' perspectives on the daily impact of their symptoms. This qualitative interview study was conducted to better understand patients' experiences with oHCM.
In October 2019, telephone interviews were conducted with 20 US adults with oHCM identified by the Hypertrophic Cardiomyopathy Association. Using a semi-structured interview guide, key symptoms, impacts of oHCM and oHCM treatment goals were discussed.
Median age was 54 years (range 29-78), 55% were women, 85% were white and 15% were Hispanic or Latino. Median time since diagnosis was 3 years. Symptoms included shortness of breath, dizziness/light-headedness, heart palpitations/fluttering (all 95%), fatigue (90%) and chest pain/pressure (80%). All participants reported limitations in physical functioning/activities; most reported additional impacts (emotional stress (80%), fear of dying (55%)). Shortness of breath and fatigue were among their most bothersome symptoms; an effective oHCM treatment would need to improve ≥1 of these symptoms (allowing increased physical/social activity).
Patients with oHCM experience a high symptom burden and psychosocial impacts, affecting health status. Improved shortness of breath, fatigue and physical functioning are highly valued by patients and represent important treatment goals.
肥厚型心肌病（HCM），包括梗阻性肥厚型心肌病（oHCM），是导致生活方式受限症状的最常见遗传性心肌病。关于患者对其症状的日常影响的看法，目前数据尚缺乏。本定性访谈研究旨在深入了解患者的 oHCM 体验。
2019 年 10 月，通过肥厚型心肌病协会确定的 20 名美国成年 oHCM 患者进行了电话访谈。使用半结构化访谈指南，讨论了主要症状、oHCM 的影响以及 oHCM 治疗目标。
中位年龄为 54 岁（范围 29-78 岁），55%为女性，85%为白人，15%为西班牙裔或拉丁裔。诊断后中位时间为 3 年。症状包括呼吸困难、头晕/头晕（均为 95%）、心悸/颤动（均为 95%）、疲劳（90%）和胸痛/压痛（80%）。所有参与者均报告了身体机能/活动受限；大多数参与者报告了其他影响（情绪压力（80%），担心死亡（55%））。呼吸困难和疲劳是他们最困扰的症状；有效的 oHCM 治疗需要改善≥1 种这些症状（允许增加身体/社会活动）。
oHCM 患者经历了高症状负担和心理社会影响，影响了健康状况。改善呼吸困难、疲劳和身体机能是患者高度重视的，并代表了重要的治疗目标。
