Background

Limited studies exist that describe diagnosis, treatment, and management experiences of patients with hypertrophic cardiomyopathy (HCM). This study's purpose is to characterize patient experiences related to symptom onset, diagnosis, symptom management, support from healthcare professionals, and impacts on daily living.

Methods

Semi-structured interviews were conducted using open-ended questions and question probes were conducted with adults aged ≥18 years diagnosed with HCM ≥1 year prior. Interview recordings were transcribed verbatim and inductive and deductive thematic analyses were performed.

Results

A total of 32 interviews were conducted. The majority of participants were female (53.1%), aged ≥45 years (90.6%), white (96.9%), and non-Hispanic (96.9%). Participants with longer time to HCM diagnosis described having atypical HCM symptoms, denial of their own symptoms, and experiences of misdiagnoses. For HCM information and support, participants utilized personal healthcare professionals as well as non-medical resources. Participants described experiences of anxiety, denial, and upset feelings about their diagnosis, but also gratitude, acceptance, and increased mindfulness toward healthy habits. Individuals reported making changes in daily activities because of reduced physical capacity and making changes in lifestyle choices because of desire to be close to HCM specialists. Over time, participants also described becoming less fearful through utilization of available resources and treatment options.

Conclusions

The diverse but often challenging experiences of individuals with HCM suggest that increasing availability and utilization of HCM patient resources may be effective at reducing the unfavorable physical and psychological impacts of HCM. Common reports of misdiagnoses resulting in delayed HCM diagnosis also indicate a need for HCM-related educational opportunities for healthcare professionals.

中文翻译：

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肥厚型心肌病诊治经验及对中老年人生活质量影响的探讨：一项访谈研究

背景

描述肥厚型心肌病 (HCM) 患者的诊断、治疗和管理经验的研究有限。本研究的目的是描述与症状发作、诊断、症状管理、医疗保健专业人员的支持以及对日常生活的影响相关的患者体验。

方法

使用开放式问题进行半结构化访谈，并对 18 岁以上且在 1 年前诊断为 HCM 的成年人进行提问。访谈录音被逐字转录，并进行归纳和演绎主题分析。

结果

共进行了 32 次访谈。大多数参与者是女性 (53.1%)、年龄≥45 岁 (90.6%)、白人 (96.9%) 和非西班牙裔 (96.9%)。HCM 诊断时间较长的参与者描述了具有非典型 HCM 症状、否认自己的症状以及误诊经历。对于 HCM 信息和支持，参与者利用了个人医疗保健专业人员以及非医疗资源。参与者描述了对他们的诊断的焦虑、否认和不安的经历，但也描述了对健康习惯的感激、接受和更多的正念。个人报告说，由于身体能力下降而改变了日常活动，并由于希望接近 HCM 专家而改变生活方式选择。随着时间的推移，

结论

HCM 患者的多样化但往往具有挑战性的经历表明，增加 HCM 患者资源的可用性和利用率可能有效减少 HCM 对身体和心理的不利影响。导致 HCM 诊断延迟的误诊的常见报告也表明医疗保健专业人员需要与 HCM 相关的教育机会。