Chia Karen S W, Brown Karen, Kotlyar Eugene, Wong Peter K K, Faux Steven G, Shiner Christine T
Department of Rehabilitation, St Vincent's Hospital Sydney, NSW, Australia.
St Vincent's Clinical School, University of New South Wales, Sydney, NSW, Australia.
Pulm Circ. 2020 Nov 16;10(4):2045894020968023. doi: 10.1177/2045894020968023. eCollection 2020 Oct-Dec.
Patients with pulmonary hypertension are more sedentary than the general population, but attitudes and experiences that may influence their exercise behaviour remain poorly understood. This study identified patterns of behaviour, attitudes towards exercise, barriers and enablers of exercise for people living with pulmonary hypertension. Accessibility of rehabilitation services from a patient perspective was also explored. A voluntary, international survey of people living with pulmonary hypertension was conducted, with mixed quantitative and qualitative data collection. Data from 187 participants in 19 countries were included in the analyses. In total, 52% (95/183) of people with pulmonary hypertension reported that they attempted to engage in regular physical activity. This was less than the proportion who did so prior to diagnosis (61%, 112/184, = 0.006) and was accompanied by uncertainty and anxiety about exercise. In total, 63% (113/180) of the cohort reported experiencing previous adverse events while exercising, which was associated with a greater likelihood of ongoing exercise concerns and anxiety. Fear, frustration and uncertainty about exercise were noted as common barriers to engaging in exercise with pulmonary hypertension. Other barriers to exercise included intrinsic factors such as debilitating breathlessness and fatigue, and external factors such as cost and access to appropriate services. Most respondents (76%, 128/169) did not have access to a multi-disciplinary rehabilitation service, although an overwhelming majority (92%, 159/172) reported that this would be helpful. Respondents rated education; a supervised, structured exercise programme; and psychology input as the most important components of a multi-disciplinary rehabilitation service for pulmonary hypertension. Health professionals must work together with consumers to co-design rehabilitation services that will facilitate exercise and increased activity for people living with pulmonary hypertension.
肺动脉高压患者比普通人群的运动量更少，但对于可能影响他们运动行为的态度和经历，我们仍知之甚少。本研究确定了肺动脉高压患者的行为模式、对运动的态度、运动的障碍和促进因素。同时还从患者角度探讨了康复服务的可及性。我们对肺动脉高压患者开展了一项自愿参与的国际调查，采用了定量和定性混合的数据收集方法。分析纳入了来自19个国家的187名参与者的数据。总体而言，52%（95/183）的肺动脉高压患者报告称他们试图进行规律的体育活动。这一比例低于诊断前进行规律体育活动的比例（61%，112/184，P = 0.006），并且伴随着对运动的不确定感和焦虑感。总体而言，63%（113/180）的队列报告在运动时曾经历过不良事件，这与持续存在的运动担忧和焦虑的可能性更大有关。对运动的恐惧、沮丧和不确定感被认为是肺动脉高压患者进行运动的常见障碍。其他运动障碍包括内在因素，如使人虚弱的呼吸急促和疲劳，以及外在因素，如费用和获得适当服务的机会。大多数受访者（76%，128/169）无法获得多学科康复服务，尽管绝大多数（92%，159/172）报告称这会有所帮助。受访者将教育、有监督的结构化运动计划和心理支持列为肺动脉高压多学科康复服务的最重要组成部分。卫生专业人员必须与患者共同努力，共同设计康复服务，以促进肺动脉高压患者的运动并增加其活动量。
