我国散发型克-雅病失能等级及权重初步评定

Assessment of disability level and weight of sporadic Creutzfeldt-Jakob disease cases in China

目的评定我国散发型克–雅病(sCJD)的失能等级及权重。方法以六级社会功能分级标准制定我国sCJD失能分级标准,通过德尔菲法、专家视觉模拟评分法(VAS)获取失能权重。结果德尔菲法得到sCJD平均失能权重为0.920,专家VAS得到sCJD失能权重中位数为0.850。结论 sCJD患者健康状况差、失能权重高,应给予相应的社会关注,加大朊病毒领域研究,以早日获得防治方法。

Objective To evaluate the disability level and weight of the sporadic Creutzfeldt-Jakob disease(sCJD)cases in China.Methods Two ways were used to obtain disability weight of the sCJD cases in China.One was Delphi method,another one was the expert assessment of visual analogue scale(VAS).Results The mean disability weight of the 180 sCJD patients was 0.920,which was calculated based on the standard disability level obtained by Delphi method.The median disability weight of the sCJD cases from expert assessment of VAS was 0.850.Conclusion The results indicated that the sCJD patients were in poor health with high disability weight.It is necessary to paid special attention to them and strengthen the research in the field of prion diseases to facilitate the prevention and treatment of the disease.