首页> 外文期刊>Journal of pediatric hematology/oncology: Official journal of the American Society of Pediatric Hematology/Oncology >Assessment of Self-Image With the Offer Self-Image Questionnaire in Adolescents With Hemophilia: A Single-Center Experience
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Assessment of Self-Image With the Offer Self-Image Questionnaire in Adolescents With Hemophilia: A Single-Center Experience

机译:评估自我形象与血友病的青少年提供自我图像调查问卷:单中心体验

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Background: Hemophilia, which is a chronic illness associated with recurrent bleeding, may occur with psychosocial and behavioral problems. Aim: The aim of this study was to evaluate the clinical characteristics and demographic features and changes in the self-image of adolescents with hemophilia. Materials and Methods: Data about hemophilia type, the severity of hemophilia, secondary prophylaxis received, and annual bleeding rate (ABR) were recorded from patient files. Hemophilia Joint Health Score (HJHS) and the Offer Self-Image Questionnaire (OSIQ) (as a measure of self-esteem) were applied to hemophilia patients and a healthy control group. Results: Thirty-two hemophilia patients (mean age=16.2±3.06?y) and 35 healthy male individuals (mean age=16.02±1.4?y) were enrolled in the study. Hemophilia patients had lower total OSIQ score than their peers ( P =0.007). There was no difference between patients who received and who did not receive secondary prophylaxis ( P =0.408) in terms of total OSIQ score. The median total OSIQ score of patients with pathologic HJHS (>0 points) was lower than that of patients with normal HJHS (0 points) ( P =0.010). The median of ABR was 6 (range: 0 to 20) in the whole hemophilia group. There were no differences between hemophilia patients with ABR≤4 and >4 ( P =0.084). All of the subscale parameters of the OSIQ were lower for hemophilia patients compared with their peers, besides one. The subscale of sexuality attitudes was better for hemophilia patients than for the healthy control group ( P =0.028). Conclusions: Low self-esteem in hemophilia patients indicates the importance of lifelong psychosocial support. Patients with pathologic HJHS are at risk of low-esteem. Using OSIQ with HJHS during follow-up of hemophilia patients may be useful for management.
机译:背景:心理社会和行为问题可能发生血友病,这是一种与复发出血相关的慢性疾病。目的:本研究的目的是评估血友病患有青少年自我形象的临床特征和人口特征和变化。材料和方法:患有患者文件的关于血友病类型的数据,血友病的严重程度,接受次生预防和年出血率(ABR)。血友病联合健康评分(HJHS)和报价自我形象问卷(OSIQ)(作为自尊的衡量标准)应用于血友病患者和健康对照组。结果:三十二次血友病患者(平均年龄= 16.2±3.06〜y)和35名健康男性(平均年龄= 16.02±1.4〜4)。血友病患者的总OSIQ分数比同龄人较低(P = 0.007)。收到的患者之间没有区别,并且在总OSIQ评分方面没有接受二次预防(P = 0.408)。病理HJHS(> 0点)患者的中位数的OSIQ分数低于正常HJHS(0点)的患者(P = 0.010)。全血友病组中位数为6(范围:0至20)。血友病患者ABR≤4和> 4之间没有差异(p = 0.084)。除了一个同行之外,血友病患者的所有子血症参数都较低。对于血友病患者而言,性态态度的子阶段比健康对照组更好(P = 0.028)。结论:血友病患者的低自尊表明终身心理社会支持的重要性。病理HJHS的患者面临低尊重的风险。在血友病患者随后使用OSIQ与HJHS可能有用的管理层。

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