目的 探索在《国际功能、残疾和健康分类(儿童和青少年版)》(ICF-CY)框架下开展Duchenne型肌营养不良(DMD)患儿功能和背景性因素评价的可行性,同时实施相应的家庭康复干预并评价干预效果。方法 以1名6岁5个月DMD男孩(处于行走早期阶段)为研究对象,采用北极星移动评价量表(NSAA)、计时功能测试、手持式肌力测定仪测试、体质量指数、家庭访谈等评估方法评价患儿功能和背景性因素状态并制定相应的干预计划,实施为期1年的家庭康复干预,分析上述评价指标的变化状况判断干预疗效。结果 1年后,身体功能方面,除了髋伸展肌群外其余肌群力量略有改善或维持;体质量指数没有明显改变;活动能力方面,NSAA分值略有提高并得以维持,计时功能测试大部分项目有所进步;家长对家庭康复干预的态度和执行力也有显著改善。结论 在ICF-CY框架下实施DMD患儿的家庭康复干预可行,可以使DMD患儿和家庭获得更为全面的改善。
Objective To explore the feasibility of assessments of functional and environmental factors in children with Duchenne muscular dystrophy (DMD) under the frame of International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY). To execute family intervention and to evaluate its effects. Methods A 6-year-and-5-month-old boy with DMD was enrolled to the study. Functional and environmental factors were assessed with the North Star Ambulatory Assessment (NSAA), time tests, hand-held dynamometry assessment, body mass index and family interview. Plans of family intervention were settled and executed for one year and at the end of intervention, the boy received all the above assessments to compare the effects of intervention. Results After one-year family intervention, the muscle strength was improved or maintained in most muscles except abductors of hip and the body mass index did not change. For the activities, the scores of NSAA increased and maintained, and the result of time tests improved. Otherwise, attitude and execution of parents were improved. Conclusion It is feasible to execute family intervention under the frame of ICF-CY in children with DMD. Both children and their family may benefit from the intervention.
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