"A new realization of what I'm able to do": exercise interventions can impact knowledge, confidence and daily activity for people with pulmonary arterial hypertension (PAH).

Abstract

Exercise-based rehabilitation interventions can improve functional outcomes in pulmonary arterial hypertension (PAH), but barriers to participation are common and little is known about the patient-reported experience. This study evaluated the patient experience of participating in structured, outpatient exercise interventions for PAH, and explored how participation may impact knowledge, attitudes and engagement in physical activity. A mixed-methods evaluation was conducted alongside a pilot trial (ExPAH). Semi-structured interviews were completed with participants who undertook a 12-week, outpatient exercise-based intervention for PAH. Interview data were analyzed <i>via</i> descriptive and inductive thematic analyses. Fourteen participants were included (mean 53 ± 14.9 years, 79% females). Formal therapy programs were reported to be enjoyable and increased participant's knowledge, confidence to exercise, and daily physical activity. Six dominant themes described the subjective experience of undertaking a structured program: confronting a sense of loss and limitation through exercise; "permission to try" built knowledge and confidence; finding joy and empowerment through physical activity; the importance of motivation; reframing exercise as part of daily life; and exercise as liberating. Structured therapy programs can increase knowledge, confidence, and positive perceptions of physical activity for people with PAH. Structured programs were reported to be enjoyable, empowering and increased functional independence.