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成人幼年特发性皮肌炎患者的生活质量:病例对照研究。

Quality of life in adults with juvenile-onset dermatomyositis: a case-control study.

机构信息

Oslo University Hospital and Rikshospitalet, Oslo, Norway.

出版信息

Arthritis Care Res (Hoboken). 2012 Jul;64(7):1020-7. doi: 10.1002/acr.21637.

Abstract

OBJECTIVE

To compare quality of life in adults diagnosed with juvenile dermatomyositis (DM) with that of matched controls, and to analyze the association with other disease parameters in patients.

METHODS

Thirty-nine patients with juvenile DM (ages ≥ 18 years) were clinically examined and compared with 39 age- and sex-matched controls. Global and health-related quality of life (HRQOL) were assessed by the Norwegian version of the Quality of Life Scale (QOLS-N) and the Short Form 36 (SF-36), respectively. For patients, disease parameters were assessed by the Disease Activity Score (DAS), Health Assessment Questionnaire (HAQ), and Myositis Damage Index (MDI).

RESULTS

Compared to the controls, patients with juvenile DM assessed a median of 22.2 years (range 1.8-36.1 years) after disease onset had reduced HRQOL in general health (P = 0.009) measured by the SF-36. In patients, a moderate correlation was found between the physical component summary (PCS) score and the DAS (r(s) = -0.422) and MDI (r(s) = -0.381), and a strong correlation was found between the PCS score and the HAQ (r(s) = -0.516). There were no differences between patients and controls in the SF-36 mental component summary scores. Patients and controls had similar total scores of the QOLS-N, but differences existed within certain items.

CONCLUSION

Adult patients with juvenile DM had, compared to controls, reduced HRQOL in general health measured by the SF-36, but not in the other subscales of the SF-36 or in global quality of life measured by the QOLS-N. An association was found between disease parameters and reduced HRQOL in the physical domains.

摘要

目的

比较成人青少年皮肌炎(DM)与匹配对照者的生活质量,并分析与患者其他疾病参数的相关性。

方法

对 39 例青少年 DM(年龄≥18 岁)患者进行临床检查,并与 39 名年龄和性别匹配的对照者进行比较。采用挪威生活质量量表(QOLS-N)和健康简表 36(SF-36)评估整体和健康相关生活质量(HRQOL)。对于患者,采用疾病活动评分(DAS)、健康评估问卷(HAQ)和肌炎损伤指数(MDI)评估疾病参数。

结果

与对照组相比,患有青少年 DM 的患者在疾病发病后平均 22.2 年(范围 1.8-36.1 年)评估 HRQOL 时,一般健康状况(SF-36)较差(P=0.009)。在患者中,物理成分综合评分(PCS)与 DAS(r(s)=-0.422)和 MDI(r(s)=-0.381)呈中度相关,与 HAQ 呈强相关(r(s)=-0.516)。患者与对照组在 SF-36 心理成分综合评分方面无差异。患者和对照组在 QOLS-N 总分方面相似,但在某些项目中存在差异。

结论

与对照组相比,成人青少年皮肌炎患者 SF-36 一般健康状况的 HRQOL 下降,但 SF-36 其他子量表和 QOLS-N 整体生活质量无差异。发现疾病参数与生理领域的 HRQOL 下降相关。

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