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The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey

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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. [4]Department of Respiratory Medicine, Capital Medical University, e ISEEKPH Hope Center, Beijing, P.R. China.
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关键词: caregivers patients pulmonary arterial hypertension quality of life survey

摘要:
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.

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出版当年[2016]版:
大类 | 2 区 医学
小类 | 2 区 医学:内科
最新[2025]版:
大类 | 4 区 医学
小类 | 4 区 医学:内科
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出版当年[2015]版:
Q2 MEDICINE, GENERAL & INTERNAL
最新[2023]版:
Q2 MEDICINE, GENERAL & INTERNAL

影响因子: 最新[2023版] 最新五年平均[2021-2025] 出版当年[2015版] 出版当年五年平均[2011-2015] 出版前一年[2014版] 出版后一年[2016版]

第一作者:
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
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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
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