{"title":"日本肥厚性心肌病患者的经历、负担和需求的定性分析。","authors":"Yuichiro Maekawa, Yuika Ikeda, Makio Torigoe, Kanako Shimoura, Shintaro Suo, Ryohei Takeda, Hiroaki Kitaoka","doi":"10.1080/14796678.2025.2526279","DOIUrl":null,"url":null,"abstract":"<p><strong>Aim: </strong>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.</p><p><strong>Patients & methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p><p><strong>Clinical trial registration: </strong>NCT06181617 (ClinicalTrials.gov).</p>","PeriodicalId":12589,"journal":{"name":"Future cardiology","volume":" ","pages":"1-10"},"PeriodicalIF":1.6000,"publicationDate":"2025-07-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Qualitative analysis of experiences, burdens, and needs among patients with hypertrophic cardiomyopathy in Japan.\",\"authors\":\"Yuichiro Maekawa, Yuika Ikeda, Makio Torigoe, Kanako Shimoura, Shintaro Suo, Ryohei Takeda, Hiroaki Kitaoka\",\"doi\":\"10.1080/14796678.2025.2526279\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Aim: </strong>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.</p><p><strong>Patients & methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p><p><strong>Clinical trial registration: </strong>NCT06181617 (ClinicalTrials.gov).</p>\",\"PeriodicalId\":12589,\"journal\":{\"name\":\"Future cardiology\",\"volume\":\" \",\"pages\":\"1-10\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2025-07-11\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Future cardiology\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1080/14796678.2025.2526279\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"CARDIAC & CARDIOVASCULAR SYSTEMS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Future cardiology","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1080/14796678.2025.2526279","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"CARDIAC & CARDIOVASCULAR SYSTEMS","Score":null,"Total":0}
Qualitative analysis of experiences, burdens, and needs among patients with hypertrophic cardiomyopathy in Japan.
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.
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.
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