Quality of life of patients with fibrodysplasia ossificans progressiva.
Quality of life of patients with fibrodysplasia ossificans progressiva.
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DOI：
10.1007/s11832-015-0704-6
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发表时间：
2015-12
期刊：
影响因子：
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通讯作者：
Colmenares-Bonilla D
中科院分区：
文献类型：
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作者：
Ortiz-Agapito F;Colmenares-Bonilla D
进行性骨化性纤维发育不良（FOP）是一种罕见的疾病，其特征是急性疼痛和软组织异位骨化，以及逐渐限制的身体功能和社会参与。我们的目的是确定FOP对生活质量的影响，指定受影响最大的领域或维度。这是一项横向观察性研究;使用简表36评估FOP患者。问卷调查结果使用质量度量软件获得，并使用频率分布，百分比和集中趋势的措施进行分析。8例患者，平均年龄30.2岁，被纳入。物理维度受影响最大，平均为25.5分。最具代表性的项目是功能和身体角色受损。躯体疼痛平均44.5分。在情感角色和心理健康方面得分最高，平均分分别为79和76。FOP是一种严重致残性疾病，导致生活质量显著恶化，继发于身体能力的进行性恶化。这项研究的结果表明，良好的自我评价的健康参与者。
Fibrodysplasia ossificans progressiva (FOP) is a rare disorder characterized by episodes of acute pain and heterotopic ossification of soft tissue, and progressively limited physical function and social participation. We aimed to determine the impact of FOP on quality of life, specifying areas or dimensions most affected. This was a transverse observational study; patients with FOP were assessed using the Short Form 36. Questionnaire results were obtained using Quality Metric software and analyzed using frequency distribution, percentages and measures of central tendency. Eight patients, mean age 30.2 years, were included. The physical dimension was the most affected, with an average of 25.5 points. The most representative items were impaired function and physical role. Physical pain was found with an average of 44.5 points. The best scores were reported in the areas of emotional role and mental health, with an average of 79 and 76 respectively. FOP is a severely disabling disease, generating a significant deterioration in quality of life secondary to progressive deterioration in physical abilities. The findings of this study demonstrate good self-rated health of participants.