癲癇青少年生活品質及相關因素之探討
中文摘要
在青少年時期若罹患慢性疾病，則易使其社會功能、同儕關係、自尊、情緒及認知方面 產生障礙，而癲癇青少年比一般青少年及其他慢性疾病者更有行為社會問題。本研究採 橫斷式描述性與相關性研究 (cross-sectional descriptive and correlational study) ，旨在探 討癲癇青少年健康相關之生活品質及其相關因素。於台灣南部及北部兩所醫學中心兒童 癲癇特別門診收案，以結構式問卷訪談 102 位非續發性癲癇青少年病患。收案資料包括 基本資料表 ( 基本屬性、疾病特性 ) 、癲癇青少年生活品質量表（ QOLIE-AD-48 ）及 癲癇青少年疾病認知評量表三部份。所得資料以 SPSS for Windows 10.0 套裝統計軟體 進行資料分析。研究結果發現：（ 1 ）癲癇青少年生活品質平均得分為 69.94±14.48 ， 屬中等程度，各次項平均得分依次為學校行為、身體功能、記憶力和注意力、癲癇之影 響、烙印、社會支持、健康認知、對癲癇之態度。（ 2 ） 癲癇青少年疾病認知平均得 分 0.78±0.14 ，屬中上程度。（ 3 ）癲癇青少年在「對癲癇之態度」方面的生活品質得 分僅有 28.68 ，表現最差。（ 4 ）基本屬性及疾病特性方面以年齡、是否重讀、兄弟姊 妹數、家族史、初次發作年齡、患病年數、發作類型、發作頻率、未發作年數、發作時 程、藥物種類及服藥總年數與整體生活品質或各次項之間呈顯著相關。（ 5 ）疾病認知 程度與「整體的生活品質」得分呈正相關。（ 6 ）發作頻率、是否重讀、兄弟姊妹數、病因知識為「整體生活品質」的預測因子，解釋變異量為 24.7﹪ 。本研究為國內少數 以量性調查癲癇青少年生活品質及相關因素的研究之一，結果可提供相關醫療專業人員 改善癲癇青少年生活品質及從事癲癇青少年的研究時之參考。
關鍵詞：癲癇青少年、生活品質、疾病認知The Quality of Life and Related Factors in Adolescents with Epilepsy
英文摘要
In the adolescent stage, a chronic medical disorder can impair patients social functions, peer relations, self-esteem, mood and cognition status. Adolescents with epilepsy have a higher frequency of behavioral problems than do healthy and other chronic ally ill groups.
The main purpose of this cross-sectional descriptive and correlational study was to explore the quality of life and related facto rs in adolescents with epilepsy. The subjects were interviewed with questionnaires at the pediatric epilepsy outpatient clinics o f two medical centers in northern and southern parts of Taiwan. The study consisted of 102 non-secondary epilepsy patients, a ge 12 to 18. The instruments used in this study are : Personal Data Sheet (demography and characteristics of illness data), the Measurement of the Quality of Life in Adolescents with Epilepsy Inventory-48 (QOLIE-AD-48), Knowledge of Disease in A dolescents with Epilepsy Instrument. The SPSS for Windows 10.0 was used for data analysis.
The important findings are as follows: (1)The average score of the quality of life is 69.94±14.48, which is in the middle level.
The average scores of the eight subscales on the QOLIE-AD-48 from high to low are : school behavior, physical functioning, memory/concentration, epilepsy impact, stigma, social support, health perceptions and attitudes toward epilepsy. (2)The avera ge score of knowledge of disease is 0.78±0.14, which is above the middle level. (3)The average score of subscale “attitudes to ward epilepsy” is only 28.68, which is the worst score. (4)Age, lack of educational advancement, number of siblings, family h istory, age of onset, number of years with disease, type of epilepsy, frequency of seizures, years of no seizures, duration of sei zures, medications, and number of years on medicine have a significant influence on the whole quality of life. (5)Subjects rep ort higher score on knowledge of disease also have higher score on the QOLIE-AD-48. (6)The most predictive variables for th e quality of life are : frequency of seizures, lack of educational advancement, number of siblings and knowledge of causes of t he disease. These variables account for 24.7% of the variance in the quality of life.
This study is a preliminary quantitative investigation of quality of life and related factors among adolescents with epilepsy. Th e results of this study are useful for medical personnel in helping adolescents with epilepsy to improve their quality of life.
Key words ： adolescent with epilepsy, quality of life, knowledge of disease.
