目的:述评健康与幸福感量表(EuroQoL Health and Wellbeing,EQ-HWB)健康状态分级系统的构建过程,为国内学者了解国际新量表、积累量表研发经验提供参考。方法:从PubMed、Embase、知网和万方数据库中检索并纳入所有与EQ-HWB量表研发相关...目的:述评健康与幸福感量表(EuroQoL Health and Wellbeing,EQ-HWB)健康状态分级系统的构建过程,为国内学者了解国际新量表、积累量表研发经验提供参考。方法:从PubMed、Embase、知网和万方数据库中检索并纳入所有与EQ-HWB量表研发相关的文献,从中梳理并总结量表健康状态分级系统构建的步骤方法和经验启示。结果:研究共纳入11篇文献,均为英文文献。EQ-HWB量表的健康状态分级系统通过识别量表维度、组成备选条目池、基于表面效度筛选条目、基于心理测量学筛选条目四个步骤完成构建。其研发经验启发未来研发者应基于广泛来源与透明过程开展维度识别,重点关注条目的可读性、一致性和合理性,且在设定量表心理测量学验证的亚组样本和分析指标时多加考虑。结论:通过纳入丰富维度,EQ-HWB量表能够广泛测量健康相关生命质量、幸福感、社会护理相关生命质量和护理者相关生命质量。但其测量性能与应用场景,特别是在中国人群中的表现仍待进一步探索与研究。展开更多
Background: Progression of parkinsonian motor impairment is usually rapid and relentless in multiple system atrophy (MSA)- . However, it may also be subject to considerable variation. Prospective natural history studi...Background: Progression of parkinsonian motor impairment is usually rapid and relentless in multiple system atrophy (MSA)- . However, it may also be subject to considerable variation. Prospective natural history studies using validated rating scales are required to accurately determine the progression of parkinsonism in MSA. Abstract:Objective: To assess the progression of parkinsonism in patients with the Parkinson variant of MSA. Methods Parkinsonian motor impairment was assessed on regular therapy at two time points (mean follow- up 11.8 months, SD 1.4) using the Hoehn and Yahr scale (H& Y), the Schwab and England ADL scale (SES) and the motor examination section of the UPDRS (UPDRS- III) in 38 patients with clinically probable MSA- P. Results We examined 38 patients with probable MSA- P (mean age 63.2 years, SD 7.4; mean disease duration 4.1 years, SD 3.0). The mean difference of UPDRS- III between baseline and follow- up was 10.8 (95% CI 8.6- 12.9), consistent with an average annual 28.3 % increase of UPDRS- III baseline scores. Several variables were associated with faster progression of parkinsonism including low baseline global motor disability as assessed by H& Y and SES, low baseline UPDRS III score, and short disease duration. UPDRS- III progression was unrelated to gender, age at symptom onset, and age at baseline visit. Conclusion: This is the first observational study on UPDRS rates of decline in MSA. The observed 28.6% annual increase of UPDRS- III scores illustrates the rapid progression of motor impairment in MSA. Furthermore, motor progression appeared to be accelerated during the early disease stages. Our data allow sample size calculations that maybe helpful for the planning of future therapeutic trials.展开更多
文摘目的:述评健康与幸福感量表(EuroQoL Health and Wellbeing,EQ-HWB)健康状态分级系统的构建过程,为国内学者了解国际新量表、积累量表研发经验提供参考。方法:从PubMed、Embase、知网和万方数据库中检索并纳入所有与EQ-HWB量表研发相关的文献,从中梳理并总结量表健康状态分级系统构建的步骤方法和经验启示。结果:研究共纳入11篇文献,均为英文文献。EQ-HWB量表的健康状态分级系统通过识别量表维度、组成备选条目池、基于表面效度筛选条目、基于心理测量学筛选条目四个步骤完成构建。其研发经验启发未来研发者应基于广泛来源与透明过程开展维度识别,重点关注条目的可读性、一致性和合理性,且在设定量表心理测量学验证的亚组样本和分析指标时多加考虑。结论:通过纳入丰富维度,EQ-HWB量表能够广泛测量健康相关生命质量、幸福感、社会护理相关生命质量和护理者相关生命质量。但其测量性能与应用场景,特别是在中国人群中的表现仍待进一步探索与研究。
文摘Background: Progression of parkinsonian motor impairment is usually rapid and relentless in multiple system atrophy (MSA)- . However, it may also be subject to considerable variation. Prospective natural history studies using validated rating scales are required to accurately determine the progression of parkinsonism in MSA. Abstract:Objective: To assess the progression of parkinsonism in patients with the Parkinson variant of MSA. Methods Parkinsonian motor impairment was assessed on regular therapy at two time points (mean follow- up 11.8 months, SD 1.4) using the Hoehn and Yahr scale (H& Y), the Schwab and England ADL scale (SES) and the motor examination section of the UPDRS (UPDRS- III) in 38 patients with clinically probable MSA- P. Results We examined 38 patients with probable MSA- P (mean age 63.2 years, SD 7.4; mean disease duration 4.1 years, SD 3.0). The mean difference of UPDRS- III between baseline and follow- up was 10.8 (95% CI 8.6- 12.9), consistent with an average annual 28.3 % increase of UPDRS- III baseline scores. Several variables were associated with faster progression of parkinsonism including low baseline global motor disability as assessed by H& Y and SES, low baseline UPDRS III score, and short disease duration. UPDRS- III progression was unrelated to gender, age at symptom onset, and age at baseline visit. Conclusion: This is the first observational study on UPDRS rates of decline in MSA. The observed 28.6% annual increase of UPDRS- III scores illustrates the rapid progression of motor impairment in MSA. Furthermore, motor progression appeared to be accelerated during the early disease stages. Our data allow sample size calculations that maybe helpful for the planning of future therapeutic trials.
