成年先天性心臟病病人生活品質之探討

Abstract

研究背景及目的：由於小兒心臟醫學進步，使得成年先天性心臟病病人人數穩定成長，但是卻面臨了複雜的醫療問題，社會心理等議題，使得他們的生活品質受到影響。因此本研究目的是探討成年先天性心臟病病人的生活品質及其相關影響因素。 研究方法：本研究採橫斷式研究設計，以立意取樣法，於2009年11月10日至2010年2月24日在北部的某醫學中心心臟科門診收案，研究對象為介於18-65歲之先天性心臟病病人，分為複雜及單純兩組，符合選樣條件之研究對象為133人，實際收集有效個案121人，回應率91%。使用結構式問卷，內容包含：台灣簡明版世界衛生組織生活品質問卷、紐約心臟協會心臟病人功能性分級量表、基本資料表等三大部份，以SPSS 13.0 for windows套裝軟體進行資料的描述性及推論性統計分析。 結果： 1、兩組研究對象在四個範疇生活品質得分最高的為生理健康範疇，複雜組得分最低的為社會關係範疇，單純組得分最低的為心理範疇。單純組的社會關係及環境範疇得分顯著高於複雜組。本研究對象的生理健康範疇及一般健康狀態(G4) 得分顯著低於健康人，環境範疇及整體生活品質(G1)得分顯著高於健康人。本研究對象在所有範疇的得分均高於心臟病人，也高於血液透析患者。 2、複雜組中，沒有宗教信仰者在生理健康及心理範疇得分顯著較有宗教信仰者高。自覺健康狀況好/很好者在生理健康及心理範疇得分顯著高於差/很差者。自覺生活狀況快樂/很快樂者在四個範疇得分都是顯著最高的。已知有先天性心臟病時間與生理健康範疇達顯著負相關，也就是說已知有先天性心臟病時間越久時，生理健康範疇之生活品質越差。治療次數與心理範疇達顯著負相關，也就是說當需要治療次數越多時，心理範疇之生活品質越差。單純組中，已婚/同居者在生理健康範疇顯著高於離婚/分居者。有重大傷病卡者在生理健康範疇顯著低於沒有者。自覺健康狀況好/很好者在生理健康、心理及環境範疇得分都是顯著最高的。自覺生活狀況快樂/很快樂者在四個範疇得分都是顯著最高的。沒有其他疾病者在心理範疇得分顯著高於有一種其他疾病者。以開刀及心導管兩者均有者在心理及環境範疇得分是顯著最低的。沒有使用心臟科用藥者在生理健康範疇顯著高於有使用者。心臟科用藥數量與生理健康範疇達顯著負相關，也就是說心臟科用藥數量越多時，生理健康範疇之生活品質越差。 3、影響研究對象生活品質四大範疇之預測因子，¬¬於生理健康範疇包括自覺健康狀況、自覺生活狀況及心臟科用藥數量；心理範疇包括自覺生活狀況、其他疾病史及自覺健康狀況；社會關係及環境範疇包括自覺生活狀況及疾病分組，解釋變異量之範圍為24.1%-44.2%。 結論：成年先天性心臟病病人的生理健康範疇生活品質及一般健康狀態低於健康人，其他範疇之生活品質與健康人相似，也較長期慢性病之心臟病及血液透析病人佳。因此，未來應在生理及社會心理層面需給予成年先天性心臟病病人較多的關注。本研究結果有助於瞭解成年先天性心臟病病人的生活品質情形，同時可提供醫護團隊成員在進行全面照護管理計畫之參考依據。

Background and Purposes: Due to the advancement of the pediatric cardiology, the number of the adult congenital heart disease (ACHD) patient has been stably grown. However, the complicated medical and psychosocial issues have affected the patients’ quality of life (QOL). The aim of this research is to investigate the adult congenital heart disease patients’ quality of life as well as other relevant influential factors. Research method: This research applied the cross-sectional design to collect data, by means of purposive sampling approach at the Cardiology Department of a medical center in Taipei, from 10th November 2009 to 24th February 2010. Further, this research targeted on the ACHD patients aged between 18 and 65 and divided the sample into complicated and simple groups. 133 patients meet the requirement of the target and 121 valid samples were collected with a 91% of valid return rate. The content of the structured questionnaire includes the World Health Organization Quality of Life-BREF (WHOQOL-BREF) Taiwan version, the functional classification of the New York Heart Associations and demographic information form. Finally, the SPSS 13.0 for windows was used to conduct the descriptive and inferred statistics analysis. Results: 1. The physical health domain received the highest score among four QOL for both groups. The social relationships domain received the lowest score for the complicated group while the psychological domain of the simple group received the lowest score. The scores of the social relationships and environment domains for the simple group were significantly higher than the scores of the complicated group. The physical health domain and the general health (G4) of the research subjects were significantly lower than those of the health people. However, the scores of the environment domain and the overall QOL (G1) were significantly higher than the scores of the healthy people. The overall score of the research targets were higher than the score of the heart disease patients and the hemodialysis patients. 2. For the complicated group, the scores of the physical health and psychological domains of the non believers in religion were significant higher than the scores of the religious believers. Those who were good/very good self-awareness of their health received much better physical health and psychological scores than those who were poor/very poorly self-awareness. Those who were happy/very happy about their lives received significant higher scores in all the four domains. The time for diagnosing the congenital heart disease was significantly negatively associated with the physical health domain. In other words, if the time for diagnosing the congenital heart disease was longer, the QOL of physical domain were worse. Moreover, the number of treatment was negatively associated with the QOL of the psychological domain. In other words, if the number of treatment required increases, the QOL of the psychological domain were decrease. For the simple group, the married couples/cohabitants received significant higher score in physical health domain than divorced/separated couples. Those who had a server illness card receive significant lower score in physical health domain than those who did not have. Those who were good/very good self-awareness of their health condition significantly received the highest score in physical health, psychological and environment domains. Those who were happy/very happy about their lives significantly received the highest scores in all of the four domains. The patients without other disease received higher score in psychology domain than the patients who had another disease. The patients who had the operation and catheterization received the lowest scores in both physical health and environment domains. The patients who did not take the cardiac medication received higher score in physical health domain comparing to those who took the medication. The amount of the cardiac medication being taken was significantly negatively associated with the physical health domain, which means the QOL of the physical health domain were decrease if the amount of the cardiac medication increases. 3. The predicted variables of that had the impact on the four QOL domains, the physical health domain included the self-awareness of health and life condition and the amount of the cardiac medication; the psychological domain included self-awareness of life condition, other medical history and self-awareness of health condition; the social relationships and environment domains included the self-awareness of life condition, disease groups, and the explained variances ranged from 24.1% to 44.2%. Conclusion: The ACHD patients receive lower scores of quality of life in the physical domain and general health (G4), but receive scores similar to healthy people in other domains of QOL. Besides, they also have a better QOL comparing to the chronic heart disease and hemodialysis patients. In the future, more attention will be paid to the needs of the physical and psychological perspectives for ACHD. The finding of this research is benefical to understand the life quality of the heart disease patients meanwhile providing the references for the health care team workers in terms of the implementation of the holistic care management plan.