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.

IF 3.5 2区医学 Q2 GENETICS & HEREDITY

Orphanet Journal of Rare Diseases Pub Date : 2025-08-21 DOI:10.1186/s13023-025-03931-w

Rahime Nur Demir, Ramazan Kiraç, Fatma Çiftçi Kiraç

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引用次数: 0

Abstract

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.

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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

背景：家族性地中海热（FMF）是一种自身炎症性疾病，常伴有发热和浆膜炎发作，腹膜、胸膜、滑膜，很少有心包幸免。本研究考察了FMF患者疾病管理自我效能感和疾病适应水平对生活满意度的影响。方法：本观察性横断面研究采用基于网络的问卷，于2024年2月1日至2024年4月25日期间通过Facebook和Instagram FMF组发送。本研究的人群包括至少一年前在泰国诊断为FMF的患者。结果：FMF患者治疗慢性疾病的自我效能感平均得分为4.67分。根据研究结果，确定身体适应是FMF患者的最高适应。其次是心理适应和社会适应。总体而言，患者在疾病适应及其子维度上的得分接近平均值。患者的生活满意度得分低于平均水平。结论：本研究揭示了台湾FMF患者的自我效能感和疾病适应水平影响其生活满意度。

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

Orphanet Journal of Rare Diseases 医学-医学：研究与实验

CiteScore

6.30

自引率

8.10%

发文量

418

审稿时长

4-8 weeks

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.