2012-08-012024-05-14https://scholars.lib.ntu.edu.tw/handle/123456789/660321摘要：研究背景：泛自閉症疾患 (Autism Spectrum Disorders, ASD)包括自閉性疾患、亞斯伯格症及其他未註明之廣泛性發展疾患，其核心症狀為社交能力缺損、溝通障礙和行為異常。ASD 兒童常因其核心障礙，以致在各項活動之功能表現、家庭、及學校參與等方面有困難，進而影響生活品質。世界衛生組織於 2007 年提出「兒童/青少年之國際功能、失能與健康分類系統」(International Classification of Functioning, Disability and Health for Children and Youth,ICF-CY)。ICF-CY 包含健康狀況、身體功能與構造、活動及參與及情境因素 (包含個人因素及環境因素)。長期追蹤研究指出ASD 兒童在認知及語言等身體功能與構造的能力上隨著發展而進步，但探討這些能力的進步與實際生活的參與之關係的研究則十分有限。參與家庭或學校生活是兒童療育的最終目標，愈來愈多研究及臨床證據顯示，療效的評量應著重兒童在家庭、學校及社區的參與情況以及康相關生活品質 (health-related quality of life, HRQOL)，而不只是評量治療前後身體功能與構造層面的改變。因此，瞭解兒童的家庭暨學校參與及生活品質的預測因子將有助於治療及教育計畫的擬定。此外，迄今尚無有關台灣ASD 兒童家庭參與、學校參與的發展軌跡（trajectory）之文獻。當ASD 兒童面臨重大轉銜時期，如由幼稚園進入小學時，其各項活動之功能表現、家庭參與及生活品質因轉銜而可能產生發展速率之改變或轉折，皆無法預測，進而預做準備和預防。因此，本研究將以ICF-CY 為概念架構長期追蹤ASD 兒童由幼稚園進入小學時，其家庭暨學校參與及生活品質是否出現發展速率的改變，並探討轉銜前ASD 兒童的健康狀況、身體功能與構造、活動及參與及情境因素如何影響及預測他們未來進入小學後的家庭暨學校參與及生活品質。研究目的：以ICF-CY 為概念架構，長期追蹤不同次診斷類型之ASD 兒童由幼稚園進入小學初期之生活品質、身體功能與構造、活動、家庭及學校參與、情境因素等各面向之發展趨勢。並進一步以ICF-CY 為概念架構，探討影響學齡初期不同次診斷類型之ASD 兒童生活品質、家庭暨學校參與之因子。研究方法：本研究樣本為來自全台灣幼稚園、發展中心、復健門診、小兒科等單位轉介之5 至7 歲預計下一學年上小學之學齡前ASD 孩童。考量長期追蹤研究流失率（約16％），因此第一年預計收案300 名（自閉性疾患、亞斯伯格症及其他未註明之廣泛性發展疾患，各100名），第二年250 名，第三年200 名。並根據ICF 架構，於ASD 孩童就學前(即大班階段)、轉銜初期(小學一年級)，與轉銜一年後(小學二年級)三個時間點蒐集其身體功能與構造、活動與參與及情境因素等變項以及生活品質之資料，以成長曲線模式(Growth Curve Model)分析ASD 兒童於三個時間點 (轉銜前、轉銜初期、及轉銜後第二年)之生活品質、家庭參與分數的變化，以及轉銜初期、及轉銜後第二年學校參與分數的變化暨不同診斷次類型的差異，並探討ASD 兒童生活品質、家庭暨學校參與改變的預測因子。預期貢獻：本研究的貢獻為 (1) 因採取縱貫研究設計，可瞭解ASD 兒童的生活品質、健康狀況、身體功能與構造、活動、家庭參與等因素的發展趨勢，以及(2) 瞭解影響轉銜初期ASD兒童生活品質、家庭暨學校參與的預測因子，以協助專業人員訂定有效的治療及教育計畫，(3) 內政部於民國101 年將實施以ICF/ICF-CY 為架構之新制身心障礙分類及鑑定辦法。本研究以ICF-CY 架構，探討ASD 兒童之家庭暨學校參與預測因子的結果，可作為ASD 兒童的ICF-CY 核心檢核項目(ICF-CY core set)，以增進鑑定效率和臨床實務應用。<br> Abstract: Background: Autism Spectrum Disorder (ASD) includes Autistic disorder, Asperger syndrome andPervasive Developmental Disorder Not Otherwise Specified, of which core symptoms are impaired socialinteraction and communication, and restricted and repetitive behavior. The core symptoms frequently hampertheir functional performance, home and school participations, and health-related quality of life (HRQOL). TheWorld Health Organization advocates the International Classification of Functioning, Disability and Health forChildren and Youth (ICF-CY) in 2007. The ICF-CY includes the dimensions of health condition, bodyfunction and structures, activity and participation, and context factors (including personal and environmentalfactors).Previous studies revealed that body functions, such as cognition and language abilities improved withage in children with ASD. However, limited studies investigated the association between the progress inabilities and home and school participation. Increasing scientific evidence supports that HRQO andparticipation at home and school are important outcome measures. Thus, an understanding of the determinantswill benefit professionals when making intervention plans to promote children’s best performance andparticipation. Moreover, no studies investigated the developmental trajectories of HRQOL, home and schoolparticipations in children with ASD in Taiwan. Knowledge of the developmental trajectories of HRQOL, homeand school participations and their determinants during transition from preschool to primary school in childrenwith ASD will help professionals to design the best fit intervention plan to promote a smooth transition,participation and quality of life.Purposes: The aim of this longitudinal study is to investigate the developmental trajectories of HRQOL,health condition, body function and structures, activities, home and school participations in children withdifferent subtypes of ASD during their transition from preschool to primary school, and to investigate thedeterminants of HRQOL, home and school participations in children with different subtypes of ASD using theICF-CY as a conceptual framework.Method: Children with ASD who will enroll in Grade 1 of primary schools in next school year will berecruited from kindergartens, rehabilitation and pediatric clinics, and developmental centers in Taiwan.Considering the 16% dropout rate in follow-up studies, sample size will be 300 in Year 1, 250 in Year 2, and200 in Year 3. In order to investigate the developmental trajectory of children with different subtypes of ASD,variables in the ICF-CY framework will be collected in 3 time points: one year before transition (kindergarten),the initial stage of transition (Grade 1) and a year after transition (Grade 2). Growth Curved Model will beused to analyze the developmental trend of HRQOL, home and school participations and identify thedeterminants of HRQOL, home and school participations in children with different subtypes of ASD.Anticipated results and contributions: Results of the study will contribute to the literature withknowledge of the developmental trajectories of HRQOL, health condition, body function and structures,activities, home and school participations in children with ASD, inform us of the predictors of HRQOL, homeand school participations in children with ASD when transiting from preschool to primary school, and benefitprofessionals when designing intervention plans. Results will also serve as a guide for policy makers whenmaking policies and provide scientific evidence for establishing the ICF-CY core sets for children with ASD.泛自閉症健康相關生活品質家庭參與學校參與縱貫研究Autism Spectrum Disordershealth-related quality of lifeschool and home participationslongitudinal research