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作家 / 早療協會 報導
Using International Classification of Functioning, Disability and Health (ICF) framework to understand challenges in children with Tourette syndrome: a literature review and a preliminary study
姓 名：劉文瑜1、王煇雄2、徐琳雅1、黃維彬3、鄭曉倩3
Background and Purpose Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The onset of TS typically occurs at 4 to 5 y of age for children with TS and significantly later, at 7 to 8 y, for children with chronic motor or vocal tics. The prevalence rate of TS in Taiwan for children aged from 6 to 12 years has been estimated at around 0.56%, with 36% having Attention Deficit Hyperactivity Disorder (ADHD), 27% exhibiting minor self-injury behavior and 18% showing obsessive-compulsive symptom (OCS) comorbidity. Early diagnosis of TS is important in order to provide children with the necessary support as early as possible. Despite greater awareness of TS as a result of increased educational efforts directed at physicians and other health care providers, many children with TS still remain undiagnosed, or their symptoms are wrongly attributed to behavioral conditions. Mol Debes et al. (2008) reported the median delay from onset of the presenting symptoms until diagnosis was 5.3 years and the delay from onset of tics until diagnosis 2.8 years for children with TS. It suggested that there was a lack of awareness about TS among health-related professionals and the public. The International Classification of Functioning, Disability and Health (ICF) has been proposed as a possible framework for organizing early intervention practice. This study used the framework of the World Health Organization's ICF framework to describe the possible concerns and challenges for children with TS. Method Literature review - A search was made in Pubmed published in the last 10 years with limitation in published, full-length articles or full written reports of clinical trial, human and child (0~18 years). Studies were reviewed if they contained information that determines the needs and principal problems of body functions and structures, activity, participation and contextual factors relate in children with TS. Preliminary evaluation of physical functions - Eight children with TS and eight healthy children matched for gender and age and volunteered to participate in this study. The assessment of body functions and structures included the Yale Global Tic Severity Scale (YGTSS), passive range of motion (PROM) of popliteal angle and ankle dorsiflexion with knee flexed and extended, and manual muscle testing (MMT) of ankle plantarflexors. The measurement of activities included functional walking ability using timed up and go (TUG) test and static standing balance using COP measurement in six stances on a force platform. The levels of physical abilities and participation were quantified by parents using the Child Health Questionnaire-Parent Form 50 (CHQ-PF50), the Disruptive Behavior Scale, and a self-made physical activity questionnaire. Independent t-test was used for comparisons. Results Sixty-seven studies were included for review. Of these, ten were conducted on the examination of body functions and structures, especially in brain structures and tic severity. The most common outcome measure in intervention was the Yale Global Tic Severity Scale (YGTSS). Only two studies examined the activities of upper extremities in children with TS. To date, no studies compared the differences of body functions and structures and participation of children with TS and their healthy peers. The differences between children with TS and children with typical development in their body functions and structures, as well as participation, remain unknown. Despite the small sample, children with TS had significantly poorer PROM of dorsiflexion with knee flexed (p=0.02) over their preferred leg than the healthy control children according to the preliminary results. In addition, children with TS the postural sway of one leg stand with eye closed in preferred leg was significantly larger than the healthy control children. Compared with the healthy control children, CHQ-PF50 of children with TS was lower in several domains. There were statistically significant differences between two groups in Global Health (p=0.039), Bodily Pain (p=0.003), Behavior (p=0.020), General Health Perceptions (p=0.018), Parental Impact-Time (p=0.015), Psychosocial Summary Score (p=0.009). As expected, children with TS demonstrated significantly more hyperactive behaviors than the control group. Conclusions According to the review, measurements across the components of the ICF model were limited. To improve the overall understanding of children with TS, future work may include the outcome measurements across different components. The preliminary results of physical functions evaluation suggested that children with TS might have less optimal musculoskeletal and balance functions of their preferred leg. The possible relationships between musculoskeletal impairments and balance limitations warrant further exploration. In addition, the preliminary findings suggested that children with TS demonstrated significant poor physical activities and participations in several domains than the healthy control children from the view of their parents. Special attention should be paid to not only their tic severity, but also the possible impact of tic on their health conditions (e.g. bodily pain) and their parental well-being. References Müller-Vahl KR, Buddensiek N, Geomelas M, Emrich HM. The influence of different food and drink on tics in Tourette syndrome. Acta Paediatr. 2008; 97:442-6. 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