Egholm Guðrun Jákupsdóttir, Bjerknes Margrethe, Illum Niels Ove
Division of Child Neurology, Hans Christian Andersen Hospital for Children and Adolescents, Odense University Hospital, Odense, Denmark.
Child Neurol Open. 2020 Jun 18;7:2329048X20934248. doi: 10.1177/2329048X20934248. eCollection 2020 Jan-Dec.
To describe a population of children with Down syndrome and evaluate their parents' assessment of disability.
Medical records of a population of 80 children with Down syndrome aged 5 to 17 years were analyzed for genetic background and associated diagnoses. And 27 parents to their children agreed to assess disability by employing a set of 26 International Classification of Functioning, Disability and Health body function (b) codes and activity and participation (d) codes. Clinical data were gathered and analysis of parents' assessment of disability using psychometric and Rasch analysis was performed.
Clinical data on 27 children assessed by their parents and 53 children not assessed had identical associated diagnoses. The 26 International Classification of Functioning, Disability and Health codes and qualifiers had a mean score of 2.67 (range 1.26-4.11) and corrected code-total correlations mean of 0.55 (range -1.17 to 0.82). Rasch analysis showed proper code MNSQ infit and outfit values with mean 1.03 and 1.06.
Clinical data on 27 children assessed were similar to 53 children that were not evaluated. Parents' assessment of the 27 children showed good psychometric and Rasch analysis properties. Similar results might be expected in the total population of 80 children.
描述唐氏综合征患儿群体，并评估其父母对残疾情况的评估。
分析了80名年龄在5至17岁的唐氏综合征患儿的病历，以了解其遗传背景和相关诊断。27名患儿的父母同意采用一套26项《国际功能、残疾和健康分类》身体功能（b）代码以及活动与参与（d）代码来评估残疾情况。收集了临床数据，并运用心理测量和拉施分析对父母的残疾评估进行了分析。
由父母评估的27名患儿和未评估的53名患儿的临床数据具有相同的相关诊断。26项《国际功能、残疾和健康分类》代码及限定词的平均得分为2.67（范围1.26 - 4.11），校正后的代码与总分相关性均值为0.55（范围 -1.17至0.82）。拉施分析显示代码的MNSQ拟合优度和分离度值合适，均值分别为1.03和1.06。
接受评估的27名患儿的临床数据与未评估的53名患儿相似。父母对27名患儿的评估显示出良好的心理测量和拉施分析特性。预计在80名患儿的总体中会得到类似结果。
