**Background**
Breathlessness is a common symptom associated with many prevalent diseases including chronic obstructive lung disease, asthma, heart failure, lung cancers, and post COVID-19 syndrome. Previous qualitative studies have focused mostly on patients with chronic obstructive lung disease, rather than exploring the impact of breathlessness as a symptom across a diverse set of causes. Understanding the full range of patients' experience of living with breathlessness, their care expectations, and self-management needs is vital to develop relevant health services and resources to improve clinical outcomes. This study therefore aimed to describe the perspectives of patients and carers of patients with chronic breathlessness due to diverse causes, exploring living with breathlessness, receiving medical care, and accessing information regarding self-management.
**Methods**
This qualitative study used in-depth semistructured interviews, each about 60 minutes long, undertaken virtually. Participants were adults (≥18 years old) who experienced chronic breathlessness (≥4 weeks) or were caring for someone with chronic breathlessness. Patients or people being cared for were ambulatory and had visited their general practitioner at least twice in the last 12 months. Participants were recruited based on a prespecified sampling frame to have representation across various genders, age groups, disease groups, states of residence, and settings (urban/rural). Recruitment was conducted online via two national patient registries. Thematic analysis was informed by field notes and analyzed using NVivo 12. Codes were discussed with investigators and differences solved via consensus.
**Key Results**
Fifteen individuals who had experienced breathlessness for a median of 5 years (Interquartile Range 2.75–9) were interviewed. Thirteen patients (cardiac, respiratory, and noncardiorespiratory) and two carers were interviewed (mean age 57 years, 47% female). Four key themes were identified: (1) living with breathlessness, (2) diagnosis delays, misdiagnosis, and knowledge gaps, (3) beyond curing disease: symptom relief and improving quality of life, and (4) self-management and limited support for it.
Under Theme 1, participants described how breathlessness controls their lives, with routine activities becoming a chore. They shared physical and mental triggers, and for many, breathlessness detrimentally affected their motivation to perform physical activity, leading to a vicious cycle of worsening breathlessness. Some participants expressed fatalism, accepting their inevitable demise, which compounded poor health-seeking behavior.
Under Theme 2, participants reported feeling misunderstood by those around them and by healthcare providers. Breathlessness was described as a "forgotten issue" not raised during health check-ups or consultations. Participants experienced poor continuity of care within and between specialties, with substantial delays in getting assessed. They acknowledged time constraints in practice as a barrier to complete assessment and raised the need for a clinical pathway for breathlessness for doctors, including details of community-based support services.
Under Theme 3, participants reported clinicians' tendency to focus on pharmacotherapy when managing breathlessness, with limited discussion of nonpharmacologic options. Participants wanted choice and support, especially for nonpharmacologic options such as nutrition and physical activity advice. They wanted doctors to go beyond the physical and show care about the mental impacts of breathlessness.
Under Theme 4, all participants were keen to better understand their disease and practical ways to feel better. Most felt they did not receive adequate and relevant self-management information and support. They wanted access to someone to talk to about their disease, be educated about their disease, and have a self-management plan to help them feel more in control and functional. Learning from nonmedical sources, peers, and other patient bodies was beneficial.
**Clinical Implications**
The themes identified suggest breathlessness remains a neglected condition in Australia. Patients suffer from lack of clinician awareness and expertise, poor community awareness, discontinuity of care, and too few clinical and self-management options, substantially impacting their clinical outcomes and quality of life. To improve outcomes, community perspectives, practice, and system changes are required to improve identification of those with breathlessness, shorten the time to diagnosis, provide wider treatment options especially nonpharmacologic support, and empower patients to self-manage. Specific solutions include using telehealth for respiratory assessment, developing standardized exertional tests to uncover hidden breathlessness, raising public awareness, including breathlessness in routine health check-ups, providing community diagnostic centers for spirometry, forming breathlessness referral services, providing simple tools like hand-held fans, and developing breathlessness action plans and high-quality patient education materials.