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  • 學位論文

先天性心臟病青少年健康相關生活品質及其相關因素之探討

Health Related Quality of Life and Its Associated Factors of Adolescents with Congenital Heart Disease

指導教授 : 陳月枝

摘要


研究背景:隨著醫療科技的進步,先天性心臟病對許多病患而言是一種慢性疾病,因此,此群病人之健康相關生活品質成為研究及臨床照護關切的議題。青春期是各方面發展的重大改變期,慢性病的存在對青少年產生相當大的衝擊,但目前國內外關於先天性心臟病青少年生活品質的研究甚少,而華人之研究則闕如。 研究目的:本研究的目的在了解台灣先天性心臟病青少年健康相關生活品質的現況及其相關因素,尤其是與疾病嚴重度、父母的教養態度,以及青少年的病病認知與其健康相關生活品質的關係。 研究方法:採橫斷式研究設計,屬調查設計中的比較及相關性研究。研究對象包含先天性心臟病青少年及其父母,以及一般青少年三個族群,先天性心臟病青少年及其父母之資料收集自2010年7月底至2011年8月間,於臺大兒童醫院心臟門診進行,一般青少年則自2012年4月至5月間於全國北、中、南、東國中及高中職學校中完成。以自填式問卷進行資料收集,問卷包括:兒童生活品質記錄(4.0)、先天性心臟病青少年生活品質量表(3.0)、雙親教養態度量表、魯汶先天性心臟病認知量表,及自擬之基本資料表,並從病歷中收集先天性心臟病青少年疾病資料。由於先天性心臟病青少年生活品質量表(3.0)及魯汶先天性心臟病認知量表目前尚無中文版,因此本研究分兩個階段進行,第一階段進行上述兩個量表之中文版的翻譯及內容效度測試,其它信效度則於第二階段中一併進行。第二階段進行先天心臟病青少年健康相關生活品質之現況及相關因素之探討。 研究結果:第一階段的問卷翻譯及信效度測試方面,先天性心臟病青少年生活品質量表(3.0)不論是青少年自填版或父母代填版,由內容效度指數均大於 .9、評分者間一致性係數均大於 .7,遺失值均低於1%來看,顯示此量表有良好之內容效度。建構效度方面,由先天性心臟病青少年生活品質量表(3.0)與兒童生活品質記錄(4.0)理論上具有相關之面向均達統計上之顯著相關,以及由因素分析結果發現5個因素可解釋之變異量為66.2%及53.5%,且因素結構與原量表均一致而獲證實。信度方面,青少年版及父母版各面向之Cronbach α係數介於 .71至 .95之間、青少年自評及父母代評得分在各面向間均達統計上的顯著相關、組內相關係數值(intraclass correlation coefficient,ICC)均達統計上的顯著水準等,顯示此量表具良好之信效。魯汶先天性心臟病認知量表方面,父母版及青少年自填版全量表之內容效度指數均大於 .9,評分者間的一致係數都在 .8以上,全量表遺失值均低於1.5%,顯示此量表具良好內容效度。效標關聯效度則由青少年的疾病認知與其年齡呈正相關、父母的疾病認知與其教育程度有關等結果獲得證實。第二階段的研究中發現,先天性心臟病青少年一般健康相關生活品質各面向得分介於77至91分之間,在控制兩組青少年基本人口學及家庭資料間有差異的變項之後,先天性心臟病青少年之一般健康相關生活品質總得分較一般青少年為差。先天性心臟病青少年自評與父母代評得分在各面向及總分上都有統計上顯著的正相關,但身體功能、認知問題,以及溝通等面向的得分有顯著差異。最後,先天性心臟病青少年生活品質的相關因素方面,疾病嚴重度只與身體功能面向及一般健康相關生活品質總分有顯著相關;在控制了其它因素之後,父親的關懷與過度保護,以及母親的關懷仍與大部分面向有顯著相關,並且一般健康相關生活品質總分與母親的關懷亦有顯著正相關。然而,在本研究中未發現青少年的疾病認知程度與其健康相關生活品質有相關。 討論與結論:本研究中翻譯的先天性心臟病青少年生活品質量表(3.0),以及魯汶先天性心臟病認知量表中,除認知量表之信度待探討之外,均具良好的信效度,可供未來針對先天性心臟病青少年健康相關生活品質及疾病認知之研究及臨床使用。在健康相關生活品質得分方面,先天性心臟病青少年之生活品質只有在身體功能及總得分上低於一般青少年,但整體而言他們保有相當好的健康相關生活品質。父母代評之健康相關生活品質得分雖與青少年自評得分所有的面向均有顯著的相關,但在一般健康相關生活品質中的身體功能面向,以及疾病特殊性健康相關生活品質中的認知及溝通兩個面向都達顯著差異,其中前者為青少年自評得分顯著低於父母代評得分,後兩者則相反,因此建議關於此群青少年之生活品質之研究應以青少年自評得分為主。最後,本研究發現父母親的教養態度與數個面向的相關性均達統計上的顯著水準,尤其青少年一般健康相關生活品質總分與母親的關懷呈正相關。基於本研究之發現,建議應加強先天性心臟病青少年身體功能之改善,家屬方面則除了疾病相關知識外,亦應納入父母親對先天性心臟病兒童及青少年教養態度之指導。

並列摘要


Research background: Congenital Heart Disease (CHD) has been recognized to be a chronic disease as for many people with CHD given advanced medical and surgical care. Their health related quality of life (HRQoL) is undoubtedly an important topic in clinical care and research field. A chronic disease can affect the quality of life of patients during their adolescence, which is a critical period of life as people are experiencing significant changes of not only physical but also psychosocial developmental experience. However, there are very few studies focusing on this issue of adolescents with CHD, and particularly, this topic has never been studied in Chinese society. Research purpose: This study aimed to explore the HRQoL of adolescents with CHD in Taiwan, and its associated factors, especially focusing on disease severity, parenting style, and patients’ knowledge about CHD and their HRQoL. Research method: Cross-sectional, comparative and associated research designs were used in this study. Research subjects consisted of three groups: adolescents with CHD, their parents, and healthy adolescents. The research data were collected from adolescents with CHD and their parents within the period of July 2010 to August 2011 at the Department of Pediatric of National Taiwan University Hospital. From April to May of 2012, data were collected from healthy adolescents studying at junior or senior high schools located in North, Central, South, and East of Taiwan. Subjects were requested to answer self-report questionnaires, which included PedsQL TM 4.0 Generic Core Scale, PedsQLTM 3.0 Cardiac Module, Parental BondingInstrument, Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD), and demographic form. Furthermore, disease related information of adolescents with CHD was obtained from their medical records. Since PedsQLTM 3.0 Cardiac Module and LKQCHD questionnaire were not available in Chinese, this study was divided into two parts, first, translation of the questionnaires from English to Chinese and content validity testing, and second, the research part to examine the HRQoL of adolescents with CHD and its associated factors. Results: In the first part of this study, the PedsQLTM 3.0 Cardiac Module were found with content validity index of more than .9, multi-rater kappa coefficient of higher than .7, and missing value of less than 1% in both of the adolescent self-report version and parental proxy-report version. Construct validity was proved by examining the inter-correlations between hypothesis domains of PedsQLTM 3.0 Cardiac Module and PedsQLTM 4.0 Core Scale. Furthermore, construct validity was also confirmed by factor analysis. The analytical results demonstrated that 5 factors could explain 66.2% to53.5% of variance of disease specific quality of life of adolescents with CHD, and factor structure was in line with the original version. The reliability of PedsQLTM 3.0 Cardiac Module in adolescent self-report version and parental proxy-report version had Cronbach α coefficient ranging from .71 to .95 for each domain. The correlation between adolescent self-report scores and parental proxy-report scores were statistically significant for each domain, and the intraclass correlation coefficient also achieved statistically significant. The data mentioned above showed good reliability of the PedsQLTM 3.0 Cardiac Module. The psychometric properties of LKQCHD in both adolescent’s version and parental version including content validity index, multi-rater kappa coefficient and missing value were found to be higher than .9, .8 and lower than 1.5 respectively. The results indicated good content validity of this scale. Concurrent validity was demonstrated by correlation of subjects’ disease knowledge degree to their age, and that of parental disease knowledge degree to their education level. As shown by the results in the second part of this study, the score of each domain in generic HRQoL ranged from 77 to 91. The overall score of adolescents with CHD was lower than that of healthy adolescents after the demographic data and family background information of both two groups of subjects were controlled to exclude significantly different variables. The correlation coefficient between adolescent self-report and parental proxy-report achieved statistically significant in final score and sub-score of each domain. However, scores of physical functioning, cognitive problem, and communication problem were statistically different between these two groups of subjects. Lastly, among the associated factors of HRQoL of adolescents with CHD, disease severity was only correlated to physical functioning and overall score of general HRQoL. After controlling the other variables, paternal care, paternal overprotection, maternal care, and maternal overprotection were significantly correlated to most domains of HRQoL of adolescents with CHD. The overall score of general HRQoL was positively correlated to maternal care. However, no evidence suggesting correlation between disease knowledge of adolescents with CHD and their HRQoL was found. Discussion and conclusion: The Chinese version of PedsQLTM 3.0 Cardiac Module and LKQCHD demonstrated good psychometric proprieties, and could be used to assess patients’ HRQoL and disease knowledge respectively in the clinic and research, except that the reliability of LKQCHD remained to be explored further. In general, adolescents with CHD had good HRQoL even though their physical functioning and overall score was not as good as those of healthy adolescents. The score of parental proxy-report about HRQoL of adolescents with CHD was significantly correlated to that of adolescents’ self report in terms of all domains, but the score of parental proxy-report was different from that of adolescents’ self-report in physical functioning, cognitive, and communication problem. It was thus suggested that the score of adolescent self-report should be weighed more importantly. Finally, parenting style was found to statistically associate with adolescents’ HRQoL; the overall score of adolescents’ HRQoL was positively correlated to maternal care. The findings of this study suggested that focus should be placed to improve physical functions of adolescents with CHD, in order to improve their HRQoL. Their parents should be given not only knowledge about the disease, but also guidance and instructions about parenting to their children with CHD.

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