单位:[1]Department of Respiratory and Critical Care Medicine, Center for Respiratory Diseases, China-Japan Friendship Hospital, Beijing, P.R. China.[2]Department of Respiratory and Critical Care Medicine, Beijing Institute of Respiratory Medicine, Beijing Chao-yang Hospital, Capital Medical University, Beijing, P.R. China.北京朝阳医院[3]National Clinical Research Center of Respiratory Medicine, Beijing, P.R. China.[4]Department of Respiratory Medicine, Capital Medical University, e ISEEKPH Hope Center, Beijing, P.R. China.
Pulmonary arterial hypertension (PAH) is a chronic progressive devastating disease. Symptom burden might impair health-related quality of life of patients. Furthermore, treatment on this disease brings significant financial burden to patients' families. Both physiological and psychological symptoms have been reported, but limited evidence regarding the impact of PAH on patients and caregivers exists, especially the emotional issues and their association with patients' health quality. The main purpose of this study was to describe the impact of PAH on patients and their caregivers in a Chinese population. This large-scale national survey enrolled 174 participants to complete questionnaires using face-to-face semistructured interviews. PAH influenced all aspects of patients' lives including daily activities, work, emotions, and personal relationships. Both patients and caregivers reported a major impact on family finances and on their work. The majority of patients had feelings of isolation. A lack of public understanding about PAH contributes to social isolation. Most patients and caregivers would like to get information regarding PAH doctors and patient organization contacts to obtain support. This survey-based report provides information regarding the way and extent to which PAH impacts both patients and their caregivers and provides some means for comparison with non-Chinese populations. It is important for physicians and the community to offer more support and information for PAH patients and their families.
基金:
Actelion Pharmaceuticals Ltd (China); Fund The National Key Research and Development Program of China [2006BAI01A06, 2016YFC0905600]; Fund of China 973 Program [2006BAI01A06, 2009CB522107]; Major International Joint Research Project of Natural Science Foundation of ChinaNational Natural Science Foundation of China (NSFC) [30810103904]; Beijing Youth Star of Science and Technology Program [2007B037]; Capital health research and development of special fund [2011-1004-03]; National Foundation of Natural Science of ChinaNational Natural Science Foundation of China (NSFC) [81570049]; Beijing Natural Science FoundationBeijing Natural Science Foundation [7152062]
第一作者单位:[1]Department of Respiratory and Critical Care Medicine, Center for Respiratory Diseases, China-Japan Friendship Hospital, Beijing, P.R. China.[2]Department of Respiratory and Critical Care Medicine, Beijing Institute of Respiratory Medicine, Beijing Chao-yang Hospital, Capital Medical University, Beijing, P.R. China.[3]National Clinical Research Center of Respiratory Medicine, Beijing, P.R. China.[*2]Department of Respiratory Medicine, Capital Medical University, National Clinical Research Center for Respiratory Diseases, Beijing 100029, China
共同第一作者:
通讯作者:
通讯机构:[1]Department of Respiratory and Critical Care Medicine, Center for Respiratory Diseases, China-Japan Friendship Hospital, Beijing, P.R. China.[2]Department of Respiratory and Critical Care Medicine, Beijing Institute of Respiratory Medicine, Beijing Chao-yang Hospital, Capital Medical University, Beijing, P.R. China.[3]National Clinical Research Center of Respiratory Medicine, Beijing, P.R. China.[*1]China-Japan Friendship Hospital, Yinghua Dongjie, Hepingli, Beijing 100029,China[*2]Department of Respiratory Medicine, Capital Medical University, National Clinical Research Center for Respiratory Diseases, Beijing 100029, China
推荐引用方式(GB/T 7714):
Zhai Zhenguo,Zhou Xia,Zhang Shuai,et al.The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey[J].MEDICINE.2017,96(39):doi:10.1097/MD.0000000000006783.
APA:
Zhai, Zhenguo,Zhou, Xia,Zhang, Shuai,Xie, Wanmu,Wan, Jun...&Wang, Chen.(2017).The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey.MEDICINE,96,(39)
MLA:
Zhai, Zhenguo,et al."The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey".MEDICINE 96..39(2017)