Abstract
Pulmonary hypertension (PH) is a life-limiting disease affecting circulation to the lungs. The primary symptom of PH is breathlessness, yet research has shown that patients with PH can exercise safely and can benefit from exercise to improve exercise capacity and maintain quality of life. This study aimed to investigate the nature of physiotherapy delivered to patients with PH in the UK. This was a two-phase sequential, exploratory, mixed-methods study. Interviews were conducted with seven lead physiotherapists at specialist pulmonary hypertension centers and three patients. Survey data came from 63 physiotherapists caring for patients with PH in specialist and non-specialist settings. The findings from the two phases were triangulated and analyzed. Findings showed that physiotherapists and patients see the benefit and potential of physical activity for patients with PH to maintain functional wellbeing. However, current physiotherapy provision focuses on acute inpatient care and planning for discharge and is not therefore aligned with research evidence and clinical guidelines. In the absence of inpatient rehabilitation facilities, physiotherapists will occasionally access existing community services, e.g. pulmonary rehabilitation; however, specialist knowledge of this rare condition can be lacking in local services. There is aspiration among physiotherapists and patients for a new approach which supports patients from diagnosis with PH to end of life. This includes promoting and delivering rehabilitation and exercise interventions to achieve better health outcomes, in line with patient needs. Treatment would be commissioned and delivered within existing national health systems with physiotherapists developing strategies for health improvement.