Illum Niels Ove, Gradel Kim Oren
H. C. Andersen Children's Hospital, Division of Child Neurology, Odense University Hospital, Odense, Denmark.
Center for Clinical Epidemiology and Research Unit of Clinical Epidemiology, South, Odense University Hospital, Odense, Denmark.
Clin Med Insights Pediatr. 2017 Jun 19;11:1179556517715037. doi: 10.1177/1179556517715037. eCollection 2017.
To help parents assess disability in their own children using World Health Organization (WHO) International Classification of Functioning, Disability and Health, Child and Youth Version (ICF-CY) code qualifier scoring and to assess the validity and reliability of the data sets obtained.
Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours performed scoring for 26 body functions qualifiers (b codes) and activities and participation qualifiers (d codes). Scoring was repeated after 6 months. Psychometric and Rasch data analysis was undertaken.
The initial and repeated data had Cronbach α of 0.96 and 0.97, respectively. Inter-code correlation was 0.54 (range: 0.23-0.91) and 0.76 (range: 0.20-0.92). The corrected code-total correlations were 0.72 (range: 0.49-0.83) and 0.75 (range: 0.50-0.87). When repeated, the ICF-CY code qualifier scoring showed a correlation R of 0.90. Rasch analysis of the selected ICF-CY code data demonstrated a mean measure of 0.00 and 0.00, respectively. Code qualifier infit mean square (MNSQ) had a mean of 1.01 and 1.00. The mean corresponding outfit MNSQ was 1.05 and 1.01. The ICF-CY code τ thresholds and category measures were continuous when assessed and reassessed by parents. Participating children had a mean of 56 codes scores (range: 26-130) before and a mean of 55.9 scores (range: 25-125) after repeat. Corresponding measures were -1.10 (range: -5.31 to 5.25) and -1.11 (range: -5.42 to 5.36), respectively. Based on measures obtained at the 2 occasions, the correlation coefficient R was 0.84. The child code map showed coherence of ICF-CY codes at each level. There was continuity in covering the range across disabilities. And, first and foremost, the distribution of codes reflexed a true continuity in disability with codes for motor functions activated first, then codes for cognitive functions, and, finally, codes for more complex functions.
Parents can assess their own children in a valid and reliable way, and if the WHO ICF-CY second-level code data set is functioning in a clinically sound way, it can be employed as a tool for identifying the severity of disabilities and for monitoring changes in those disabilities over time. The ICF-CY codes selected in this study might be one cornerstone in forming a national or even international generic set of ICF-CY codes for the benefit of children with disabilities, their parents, and caregivers and for the whole community supporting with children with disabilities on a daily and perpetual basis.
帮助家长使用世界卫生组织（WHO）《国际功能、残疾和健康分类》儿童和青少年版（ICF-CY）编码限定符评分来评估自己孩子的残疾情况，并评估所获得数据集的有效性和可靠性。
162名患有脊柱裂、脊髓性肌萎缩症、肌肉疾病、脑瘫、视力障碍、听力障碍、智力残疾或脑肿瘤后残疾的儿童的家长，对26个身体功能限定符（b编码）以及活动和参与限定符（d编码）进行评分。6个月后重复评分。进行了心理测量和拉施数据分析。
初始数据和重复数据的克朗巴哈α系数分别为0.96和0.97。编码间相关性分别为0.54（范围：0.23 - 0.91）和0.76（范围：0.20 - 0.92）。校正后的编码与总分相关性分别为0.72（范围：0.49 - 0.83）和0.75（范围：0.50 - 0.87）。重复评分时，ICF-CY编码限定符评分的相关系数R为0.90。对所选ICF-CY编码数据的拉施分析显示，均值分别为0.00和0.00。编码限定符内拟合均方（MNSQ）均值为1.01和1.00。相应的总体MNSQ均值为1.05和1.01。家长进行评估和重新评估时，ICF-CY编码τ阈值和类别测量值是连续的。参与研究的儿童重复评分前平均有56个编码得分（范围：26 - 130），重复评分后平均有55.9个得分（范围：25 - 125）。相应测量值分别为-1.10（范围：-5.31至5.25）和-1.11（范围：-5.42至5.36）。基于两次测量获得的数据，相关系数R为0.84。儿童编码图谱显示了ICF-CY编码在各个层面的一致性。在涵盖不同残疾类型方面具有连续性。而且，首要的是，编码分布反映了残疾的真正连续性，运动功能编码首先被激活，然后是认知功能编码，最后是更复杂功能的编码。
家长能够以有效且可靠方式评估自己的孩子，并且如果WHO的ICF-CY二级编码数据集在临床应用中表现良好，它可作为识别残疾严重程度以及监测残疾随时间变化的工具。本研究中所选的ICF-CY编码可能是形成一套全国乃至国际通用的ICF-CY编码的基石之一，以造福残疾儿童、他们的家长和照料者以及每天持续支持残疾儿童的整个社区。
