‘Tired, afraid, breathless … .’ An international survey of the exercise experience for people living with pulmonary hypertension

Abstract

Objectives: To identify patterns of exercise behaviour, attitudes towards exercise, barriers and enablers of exercise for people living with Pulmonary Hypertension (PH). Accessibility of rehabilitation services from a patient perspective was also explored. Methods: a voluntary, international survey of people living with PH was conducted, with mixed quantitative and qualitative data collection, in an online and paper format. Results: Data from 187 participants in 19 countries were included in the analyses. 52% (95/183) of people with PH 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, p=0.006), and was accompanied by uncertainty and anxiety about exercise. 63% (113/180) of the cohort reported experiencing previous adverse events whilst 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 PH. 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 this would be helpful. Respondents rated education; a supervised, structured exercise program; and psychology input as the most important components of a multi-disciplinary rehabilitation service for PH. Conclusion: Health professionals must work together with consumers to co-design rehabilitation services that will facilitate exercise and increased activity for people living with PH.

“It is the fear of exercise that stops me” – attitudes and dimensions influencing physical activity in pulmonary hypertension patients

“…However, it was a less commonly reported barrier (30% of respondents) compared to tiredness/fatigue (77%) and dyspnoea (71%). 7 The other study in PH 6 reported the primary exercise barriers as motivational (i.e., lack of self-discipline, lack of energy and lack of enjoyment). Fear was not cited as a barrier to exercise participation in the latter study.…”

“…The association between previous adverse events during exercise and exercise-related concerns or anxiety has been reported previously. 7 …”

Pulmonary hypertension and home-based (PHAHB) exercise intervention: protocol for a feasibility study

“… 16 Home-based interventions also provide solutions to common barriers to participation in centre-based programmes such as access and transport issues, and are less expensive. 17 Further, patient populations including PH 18 express a preference for unsupervised, self-paced, low-to-moderate intensity PA, specifically walking. 19 20 Through the use of telehealth, distance-based programmes could potentially offer an alternative mode of delivery for exercise training to increase adherence, availability and affordability for PH patients.…”

Patients support exercise training and rehabilitation—what more should we be doing to ensure cardiopulmonary rehabilitation is more readily available for those with pulmonary hypertension?

“…visit your physiotherapist for a detailed exercise program”—How often have we said this to our patients with pulmonary hypertension (PH), without realizing what it is that they feel about it or trying to understand why they have difficulties to carry out their exercise regime? A new paper by Chia and colleagues 1 in the current issue of Pulmonary Circulation has done just that—to identify the behaviors toward exercising, the potential barriers and facilitators, and the accessibility of these services through an international, online survey.…”

“…The online survey conducted by Chia and colleagues 1 reached 202 participants from 19 countries around the world. With respondents coming mainly from Australia and New Zealand (over 60%) and targeted at well-educated, computer-literate individuals, the survey may represent a somewhat rosier view.…”