Abstract
Introduction: People with severe asthma are thought to face a sizeable burden, beyond that of people with milder disease. Aims: To explore the little-known life experiences of people living with severe refractory asthma (SRA). Methods: Patients identified with SRA via the Australasian Severe Asthma Network and/or specialist asthma clinics across 7 Australian states were invited for telephone interview. Semi-structured interviews were conducted consecutively until no new themes emerged. Interviews were recorded, transcribed and thematically analysed. Results: Most of the 25 patients interviewed (age range: 23-81 yrs; 68% female, 16% living in regional location) experienced daily symptoms with some often unable to talk in full sentences or walk short distances. Key themes were: Burden : SRA placed wide-ranging limits on life from daily chores to career, relationships and family life; Mental Health: patients felt frustration, hopelessness and/or depression, but emotional support and/or formal support services were lacking; Practical Support : support varied from none at all to provision by willing/fatigued carer(s). Patients felt compelled to 9push through9 due to family/financial responsibility; Physician Care: patients reported need for more accessible, knowledgeable GPs, and better communication with GPs/specialists; Exacerbations/acute care : exacerbations were frightening for patients/family yet patients avoided ED to avoid the disruption of hospitalisation on daily life. Conclusions: SRA imposes long-term, debilitating burdens and should be considered differently to milder disease. There is an urgent need to improve practical and emotional support services and primary care for SRA patients, and to provide assistance for their carers.
Published Version
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