2013-08-012024-05-13https://scholars.lib.ntu.edu.tw/handle/123456789/648269摘要：高膽固醇會引發動脈硬化和心血管疾病的死亡率，是我國十大死因中重要的危險因 子之一，尤其是遺傳性家族高膽固醇血症患者若沒有適當的照護管理，會更容易有早發 性心臟病的危險，造成病人家庭的重大傷害。如何透過有效的照護方法改善患者的治療 遵從性、增進家族的健康和幸福，是醫護人員共同關注的課題。建立本土性的健康基線 資料做為未來成效追蹤之依據更有其必要性。本計畫擬以國立臺灣大學附設醫院於 2002-2011 年在台灣地區持續追蹤 100 個家庭約 450 名家族性高膽固醇血症患者為對 象，進行三年期研究。研究目的第一年：建立研究世代之家族基線資料庫、深入探討家 族性高膽固醇血症患者的服藥遵從行為與身心健康之關係。第二年針對研究世代成立病 人團體、發展並提供家庭健康管理介入方案。第三年進行固定世代之健康成效追蹤。研究工具將採用飲食行為量表、服藥遵從量表、睡眠量表、健康相關生活品質和家 庭基本資料等結構式問卷，輔以深入訪談法收集家族性高膽固醇血症患者的疾病歷程和 相關危險因子；預計於團體衛教和家庭健康照護管理方案實施一年後，再以相同的結構 式問卷進行後測，比較家庭式健康照護前後之健康成效，以及對服藥遵從性與身心健康 的影響。研究結果將有助於了解台灣本土的家族性高膽固醇血症疾病和接受治療的現 況，及家庭式照護計畫介入後身心健康的改變，做為未來對家族性疾病的群體照護策略 之參考。<br> Abstract: Hypercholesterolemia increases atherosclerosis, cardiovascular disease and mortality. It is one of the most important risk factors in the ten leading causes of mortality in Taiwan. Without proper healthcare management, patients with familial hypercholesterolemia tend to have higher risk of premature cardiovascular disease. Using effective healthcare strategies to improve the patients’ and their family members’ adherence of treatment and to enhance the health and well-being of the family, which has become a most important topic for healthcare professionals. It has long been interested in the research of cardiovascular diseases and case management in Taiwan. Studies on familial healthcare management for familial diseases are still less. Therefore, it is worthwhile to carry out a study on the effectiveness of group strategy by setting up baseline databases and follow-up the changes of patients’ treatment. Our study proposes a three-year study on 450 patients with familial hypercholesterolemia from 100 families identified from the outpatient clinic of National Taiwan University Hospital during 2002-2011. The study aims to develop a familial healthcare management model and to evaluate its effects. In the first year, we will establish baseline databases of the patients from the study cohort and perform in-depth analysis to identify the correlation among hypercholesterolemia, familial lifestyle, drug adherence, and physical and mental health. In the second year, we will introduce support groups for patients with hypercholesterolemia in the study cohort, develop a familial healthcare management model. In the third year, we will carry out a fixed cohort follow-up study.The research instruments include structured questionnaires (diet frequency, drug adherence, sleep quality, health-related quality of life and familial related risk factors) and interview guide. The same questionnaires will be tested in one year later after we provide group educations and familial healthcare management intervention. We will compare effects of the intervention with familial healthcare; analyze the influence on patients’ drug adherence and physical and mental health. Data will be analyzed using the SAS package. The Generalized Estimating Equation will be performed to identify the risk factors. The findings will add to the understanding of patients and their families’ situation in Taiwan, and find out an optimal healthcare management model as a reference for patients with familial hypercholesterolemia.家族性高膽固醇血症服藥遵從性身心健康家庭照護管理Familial HypercholesterolemiaDrug AdherencePhysical and Mental HealthFamilial Healthcare Management