Qualitative analysis of experiences, burdens, and needs among patients with hypertrophic cardiomyopathy in Japan.

IF 1.6 Q3 CARDIAC & CARDIOVASCULAR SYSTEMS

Future cardiology Pub Date : 2025-07-11 DOI:10.1080/14796678.2025.2526279

Yuichiro Maekawa, Yuika Ikeda, Makio Torigoe, Kanako Shimoura, Shintaro Suo, Ryohei Takeda, Hiroaki Kitaoka

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引用次数: 0

Abstract

Aim: To identify factors affecting the health-related quality of life (HR-QOL) of symptomatic patients with hypertrophic cardiomyopathy (HCM) using qualitative interviews exploring patients' experiences and perceptions.

Patients & methods: This cross-sectional observational study was conducted using qualitative web-based or telephone interviews. Adult patients with HCM in Japan who were experiencing burden because of HCM were included. In-depth interviews were conducted using a semi-structured interview guide. The data were analyzed using a thematic analysis approach.

Results: Nineteen patients completed the interview. Ten HR-QOL-related themes were identified. Many patients were unaware that they had HCM symptoms, either no longer noticing them following life adjustments or attributing them to factors other than HCM. HCM affected multiple life aspects, including work, family, and social life. Patients resisted disclosing their disease to others and strongly resisted invasive treatment. Patients highly trusted their physicians but were reluctant to discuss their mental burdens and daily life challenges with them.

Conclusions: This first qualitative study of HR-QOL in patients with HCM in Japan suggests that deeper physician - patient communication is needed to understand patient burden and needs, as patients have difficulty discussing their burdens with physicians and may lack awareness of HCM symptoms.

Clinical trial registration: NCT06181617 (ClinicalTrials.gov).

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日本肥厚性心肌病患者的经历、负担和需求的定性分析。

目的：通过对有症状的肥厚性心肌病（HCM）患者的经历和认知进行定性访谈，探讨影响患者健康相关生活质量（HR-QOL）的因素。患者和方法：本横断面观察性研究采用基于网络或电话的定性访谈进行。在日本，因HCM而经历负担的成年HCM患者被纳入研究。深度访谈采用半结构化访谈指南进行。使用专题分析方法对数据进行分析。结果：19例患者完成访谈。确定了10个与hr - qol相关的主题。许多患者没有意识到他们有HCM症状，要么在生活调整后不再注意到这些症状，要么将其归因于HCM以外的因素。HCM影响了生活的多个方面，包括工作、家庭和社会生活。患者拒绝向他人透露病情，强烈抵制侵入性治疗。患者高度信任他们的医生，但不愿与他们讨论他们的精神负担和日常生活挑战。结论：日本HCM患者HR-QOL的首次定性研究表明，由于患者难以与医生讨论其负担，并且可能缺乏对HCM症状的认识，因此需要更深入的医患沟通，以了解患者的负担和需求。临床试验注册：NCT06181617 （ClinicalTrials.gov）。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Future cardiology CARDIAC & CARDIOVASCULAR SYSTEMS-

CiteScore

2.80

自引率

5.90%

发文量

期刊介绍： Research advances have contributed to improved outcomes across all specialties, but the rate of advancement in cardiology has been exceptional. Concurrently, the population of patients with cardiac conditions continues to grow and greater public awareness has increased patients" expectations of new drugs and devices. Future Cardiology (ISSN 1479-6678) reflects this new era of cardiology and highlights the new molecular approach to advancing cardiovascular therapy. Coverage will also reflect the major technological advances in bioengineering in cardiology in terms of advanced and robust devices, miniaturization, imaging, system modeling and information management issues.