Rahime Nur Demir, Ramazan Kiraç, Fatma Çiftçi Kiraç
{"title":"家族性地中海热（fmf）患者疾病管理和疾病适应水平的自我效能感对生活满意度的影响：一项基于网络的横断面研究","authors":"Rahime Nur Demir, Ramazan Kiraç, Fatma Çiftçi Kiraç","doi":"10.1186/s13023-025-03931-w","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Familial Mediterranean Fever (FMF) is an auto inflammatory disease often accompanied by fever and serositis attacks in which peritoneum, pleura, synovium, and rarely pericardium are spared. In the study, the effects of self-efficacy in managing the disease and disease adaptation levels of FMF patients on satisfaction with life were examined.</p><p><strong>Methods: </strong>This observational cross-sectional study was conducted using a web-based questionnaire sent via Facebook and Instagram FMF groups between February 1, 2024 and April 25, 2024. The population of this study consisted of patients diagnosed with FMF at least 1 year ago in Türkiye.</p><p><strong>Findings: </strong>The mean self-efficacy score of FMF patients in managing chronic diseases was found to be 4.67. According to the results of the study, physical adaptation was determined to be the highest adaptation in FMF patients. This is followed by psychological adaptation and social adaptation. In general, the scores the patients obtained regarding disease adaptation and its sub-dimensions were found to be close to the average value. The satisfaction with life scores of the patients were found to be below the average.</p><p><strong>Conclusion: </strong>This study revealed that the self-efficacy and disease adaptation levels of FMF patients in Türkiye affect their satisfaction with life.</p>","PeriodicalId":19651,"journal":{"name":"Orphanet Journal of Rare Diseases","volume":"20 1","pages":"449"},"PeriodicalIF":3.5000,"publicationDate":"2025-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12372202/pdf/","citationCount":"0","resultStr":"{\"title\":\"The effects of self-efficacy in managing the disease and disease adaptation levels of Familial Mediterranean Fever (fmf) patients on satisfaction with life: a web-based cross-sectional study.\",\"authors\":\"Rahime Nur Demir, Ramazan Kiraç, Fatma Çiftçi Kiraç\",\"doi\":\"10.1186/s13023-025-03931-w\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Familial Mediterranean Fever (FMF) is an auto inflammatory disease often accompanied by fever and serositis attacks in which peritoneum, pleura, synovium, and rarely pericardium are spared. In the study, the effects of self-efficacy in managing the disease and disease adaptation levels of FMF patients on satisfaction with life were examined.</p><p><strong>Methods: </strong>This observational cross-sectional study was conducted using a web-based questionnaire sent via Facebook and Instagram FMF groups between February 1, 2024 and April 25, 2024. The population of this study consisted of patients diagnosed with FMF at least 1 year ago in Türkiye.</p><p><strong>Findings: </strong>The mean self-efficacy score of FMF patients in managing chronic diseases was found to be 4.67. According to the results of the study, physical adaptation was determined to be the highest adaptation in FMF patients. This is followed by psychological adaptation and social adaptation. In general, the scores the patients obtained regarding disease adaptation and its sub-dimensions were found to be close to the average value. The satisfaction with life scores of the patients were found to be below the average.</p><p><strong>Conclusion: </strong>This study revealed that the self-efficacy and disease adaptation levels of FMF patients in Türkiye affect their satisfaction with life.</p>\",\"PeriodicalId\":19651,\"journal\":{\"name\":\"Orphanet Journal of Rare Diseases\",\"volume\":\"20 1\",\"pages\":\"449\"},\"PeriodicalIF\":3.5000,\"publicationDate\":\"2025-08-21\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12372202/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Orphanet Journal of Rare Diseases\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1186/s13023-025-03931-w\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Orphanet Journal of Rare Diseases","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1186/s13023-025-03931-w","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
The effects of self-efficacy in managing the disease and disease adaptation levels of Familial Mediterranean Fever (fmf) patients on satisfaction with life: a web-based cross-sectional study.
Background: Familial Mediterranean Fever (FMF) is an auto inflammatory disease often accompanied by fever and serositis attacks in which peritoneum, pleura, synovium, and rarely pericardium are spared. In the study, the effects of self-efficacy in managing the disease and disease adaptation levels of FMF patients on satisfaction with life were examined.
Methods: This observational cross-sectional study was conducted using a web-based questionnaire sent via Facebook and Instagram FMF groups between February 1, 2024 and April 25, 2024. The population of this study consisted of patients diagnosed with FMF at least 1 year ago in Türkiye.
Findings: The mean self-efficacy score of FMF patients in managing chronic diseases was found to be 4.67. According to the results of the study, physical adaptation was determined to be the highest adaptation in FMF patients. This is followed by psychological adaptation and social adaptation. In general, the scores the patients obtained regarding disease adaptation and its sub-dimensions were found to be close to the average value. The satisfaction with life scores of the patients were found to be below the average.
Conclusion: This study revealed that the self-efficacy and disease adaptation levels of FMF patients in Türkiye affect their satisfaction with life.
期刊介绍：
Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.
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