異位性皮膚炎患童及家屬生活品質之探討

Abstract

本研究目的旨在跨文化測試多面向生活品質的主觀自陳式測量工具，且探討異位性皮膚炎患童人口學特質、疾病嚴重度、與小孩和家屬生活品質間之關係。 本研究區分為兩階段：第一階段進行跨文化翻譯「皮膚病兒童生活品質指標」與「皮膚炎家庭衝擊量表」之台灣版量表，並進行信效度檢測；第二階段乃以橫斷式研究立意取樣的方式，收集5 ~ 16歲經皮膚科醫師確立診斷之83位異位性皮膚炎患童及其家屬，進行台灣版量表之心理計量驗證與運用，並輔以半結構式訪談作為參考。而研究結果如下： 台灣版「皮膚病兒童生活品質指標」經過翻譯及回覆翻譯的過程與討論，已蒙獲原作者Dr. A. Y. Finlay認可，將其放置在專屬網站（http://www.dermatology.org.uk/index.asp）上。而量表中各題目與原作者建議之次群集相關係數介於0.65 ~ 0.85之間（p＜0.01），各次群集彼此間之相關係數則在0.22＊~0.52＊＊之間（p＜0.05＊、p＜0.01＊＊）；進一步以主軸因素抽取分析，直接斜交轉軸找出三個共通因素―「學校活動與休閒之影響」、「人際與情感之衝擊」、與「症狀與治療之困擾」，可解釋46.68％的變異量；三個因素與總量表之Cronbach’s α介在0.62 ~ 0.83；而三個因素與所屬量表題目間的相關係數介在0.63 ~ 0.87間（p＜0.01），則更証實了台灣版量表「皮膚病兒童生活品質指標」具備有良好的信效度。 台灣版「皮膚炎家庭衝擊量表」以探索性因素分析找出「家人之身心影響」與「家人之生活安排」等二個共同因素，其整體的解釋量為50.93％；總量表標準化後Cronbach’s α值高達0.87，量表題目與各自所屬因素間之相關係數介於0.67 ~ 0.82，由此可知量表具有相當不錯的信效度。 根據推論統計分析發現，患童基本屬性分組中以國高中生、每次發病持續一個月以上、每年發病次數大於13次以上者在「皮膚病兒童生活品質指標」得分較高，顯示其生活品質受影響之情形較嚴重；此外，兩份量表彼此間、與SCORAD值、病徵嚴重指標、主觀表述及也都有統計上的顯著相關性，這表示患童疾病嚴重程度的確會影響到自身的生活品質，而患童生活品質與疾病的情況都將牽動著家屬的生活品質。此外，患童受疾病影響最深的前三項依序是「症狀感受」、「睡眠」、和「學校家庭生活」，其中搔癢問題最嚴重；家屬則是「情緒苦惱」、「疲勞」、「睡眠」和「家事」，以睡眠長期受小孩干擾是主因。 最後，本量表的發展與臨床施測結果，將有助了解異位性皮膚炎對患童及家屬生活品質影響，相關資料除可提供本土性資料庫的建立與跨國際疾病資料比較外，更將有助專業人員提供以家庭為中心的適切照護與衛教。

The purposes of this study were to test on the cross-cultural validation of the self-administrated tool, which included the multidimensional quality of life, then to explore the relationship among the demographic variables, the children’s disease severity, and the quality of life for children and their family. Two stages of research were implemented: The first step was to complete with the cross-cultural translations of “ The Children’s Dermatology Life Quality Index〔CDLQI〕” and “ Dermatitis Family Impact Questionnaire〔DFI〕”. Moreover, cross-sectional study was conducted. A purposive sampling method was adopt to enroll 83 children aged 5 to 16, diagnosed as atopic dermatitis (AD) by dermatologist, and their family. Psychometric testing was conducted to verify the Taiwan versions of the CDLQI and DFI and semi-structured interviews were used to be the complementary supplement. The research findings were presented as follows: The CDLQI Taiwan versions underwent translation and back- translation process, have been approved by the author, Dr. A. Y. Finlay, and placed on the exclusive website, http://www.dermatology.org.uk/index.asp. In the Taiwan version, correlation between items and the original subgroups ranged from 0.69 to 0.85 ( p＜0.01 ) and from 0.22＊ to 0.52＊＊( p＜0.05＊、p＜0.01＊＊) among all the subgroups. A principal-axis factoring analysis rotated by direct oblimin was used to extract the three underlining structures of the items: effect on school life and leisure, the impact on relationship and emotion, and the problems of the symptoms and treatment. The three factors accounted for 46.68% of total variance and the range of internal consistency Cronbach’s α from 0.62 to 0.83. Correlation between items and factors ranged from 0.63 to 0.87. Good properties of internal consistency, content validity, and construct validity of the CDLQI Taiwan version were reported in this study. The DFI Taiwan version has also been extracted by exploratory factors analysis to be the two-factor structure: effect on family’s physiology and emotion, and arrangements for family daily life. Two factors were explained 50.93% of total variance. Psychometric properties of DFI Taiwan version in this study showed good reliability because standardized Cronbach’s α was 0.87 and the correlation between items and factors ranged from 0.67 to 0.82. Findings of inferential statistics showed that, the AD children, who were junior or senior high school students, each duration continued for one month, or annual arises over 13 times, would evaluate higher scores in the CDLQI questionnaire, which reprented higher impacts on the quality of life for children with AD. Furthermore, significant correlations among the two scales, SCORAD index, objective criteria, and subjective criteria showed that AD children’s disease severity did affect themselves and parents’ quality of life. The three major items of AD children affected by the disease were symptoms and feelings, sleep, school and family life; whereas pruritus was most frequently reported by AD children. The major affected items for family with AD children were psychological pressures, tiredness, sleep, and housework; but the long-term sleep deprivation was the original reason of most impact for family. In conclusion, the development and testing outcome of CDLQI and DFI Taiwan version could contribute to explore the disease’s effects on quality of life for AD children and their family. The present data could be used as basis of future domestic data gathering, cross-cultural comparison, and support the clinical specialists to supply the family-centered care and suitable education for AD family.