医生和患者对肺动脉高压治疗的期望：二者的契合点在哪里？
Physicians' and patients' expectations of therapies for pulmonary arterial hypertension: where do they meet?
作者信息
Howard Luke S, Ferrari Pisana, Mehta Sanjay
机构信息
Dept of Cardiac Sciences, National Pulmonary Hypertension Service, Hammersmith Hospital and Imperial College London, London, UK. Pulmonary Hypertension Association Europe, Vienna, Austria. Pulmonary Hypertension Association of Canada, Vancouver, BC, Canada. Dept of Medicine, Division of Respirology, Southwest Ontario PH Clinic, London Health Sciences Centre, Schulich School of Medicine, Western University, London, ON, Canada.
Dept of Cardiac Sciences, National Pulmonary Hypertension Service, Hammersmith Hospital and Imperial College London, London, UK. Pulmonary Hypertension Association Europe, Vienna, Austria. Pulmonary Hypertension Association of Canada, Vancouver, BC, Canada. Dept of Medicine, Division of Respirology, Southwest Ontario PH Clinic, London Health Sciences Centre, Schulich School of Medicine, Western University, London, ON, Canada. Dept of Cardiac Sciences, National Pulmonary Hypertension Service, Hammersmith Hospital and Imperial College London, London, UK. Pulmonary Hypertension Association Europe, Vienna, Austria. Pulmonary Hypertension Association of Canada, Vancouver, BC, Canada. Dept of Medicine, Division of Respirology, Southwest Ontario PH Clinic, London Health Sciences Centre, Schulich School of Medicine, Western University, London, ON, Canada.
出版信息
Eur Respir Rev. 2014 Dec;23(134):458-68. doi: 10.1183/09059180.00007514.
In recent years, many new, effective therapies for pulmonary arterial hypertension (PAH) have become available and are widely used, yet the long-term prognosis for patients with PAH remains poor. In the absence of a cure, physicians' expectations of PAH-specific therapies are to: 1) improve patients' symptoms and functional capacity; 2) slow disease progression; and 3) improve survival. However, patients with PAH may prioritise other more tangible needs, such as improvements in their ability to carry out their daily tasks and increase their quality of life. Patients with PAH have also called out for social and emotional support from their physicians, caregivers, families and patient associations. Therefore, it is necessary that clinical trials of PAH-specific treatments include end-points that are meaningful to both patients and physicians, and that a multidisciplinary approach to the management of patients with PAH takes into consideration the broader aspects of patients' and caregivers' needs and wishes beyond simple physiological measurements.
近年来，许多用于治疗肺动脉高压（PAH）的新型有效疗法已可供使用并得到广泛应用，但PAH患者的长期预后仍然很差。在无法治愈的情况下，医生对PAH特异性疗法的期望是：1）改善患者症状和功能能力；2）减缓疾病进展；3）提高生存率。然而，PAH患者可能会优先考虑其他更切实的需求，例如提高他们执行日常任务的能力以及提高生活质量。PAH患者还呼吁医生、护理人员、家人和患者协会给予社会和情感支持。因此，PAH特异性治疗的临床试验有必要纳入对患者和医生都有意义的终点指标，并且对PAH患者的管理采用多学科方法时，除了简单的生理测量外，还应考虑患者和护理人员需求及愿望的更广泛方面。
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