“It's like a forgotten issue sometimes …”: Qualitative study of individuals living and caring for people with chronic breathlessness

Abstract Introduction This study aims to explore the perspectives of patients and carers with chronic breathlessness on current provision of care, care expectations, and self‐management needs to develop relevant health services and resources to improve clinical outcomes. Methods In‐depth semistructured interviews were conducted on patients living with chronic breathlessness and carers. Results Thirteen patients (cardiac, respiratory, and noncardiorespiratory) and two carers were interviewed (mean age 57 years, 47% female, median duration with breathlessness 5 years). Four main 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. Conclusion Breathlessness has a high personal impact but remains a neglected condition in Australia. Patients suffer from lack of personal, community, and provider awareness, discontinuity of care, and too few clinical and self‐management options.


| INTRODUCTION
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. 1 Previous qualitative studies 2 have focused on exploring its impact, mostly in patients with chronic obstructive lung disease, rather than its impact as a symptom across a diverse set of causes.
Understanding the full range of patients' experience of living with breathlessness, their care expectations and selfmanagement needs are vital to develop relevant health services and resources to improve clinical outcomes as patients present with symptoms, rather than disease labels in practice. 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 study is reported in accordance with the Standards for Reporting Qualitative Research. 3 Further details are found in Table 1.

| RESULTS
Fifteen individuals who had experienced breathlessness for a median of 5 years (Interquartile Range 2.75-9) were interviewed. Participants demographic profile can be found in Table S1. 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. Figure 1 summarises participant-identified gaps in current care and their suggested solutions expanded below, with selected quotes presented in Table 2. Additional quotes are available in Table S2 Peer checking (process of checking a researcher's work by another person in that field) was conducted after the first three interviews between investigators (AS, CJ, and AM) before the remaining interviews were conducted. The interviews were recorded and transcribed verbatim Compensation Participants were provided gift vouchers post-interview as compensation for their time Analysis Thematic analysis informed by the field notes generated during the interviews by AS was analysed using the software NVivo 12. The codes developed were then discussed with the other investigators (CJ, AM, CA, and GM) and difference in opinions were solved via consensus. Direct remarks from the participants are presented between quotation marks.
this has detrimentally affected their motivation to perform any physical activity which may result in worsening breathlessness. For some, breathlessness side effects from common medications and comorbidities such as "spine issues" interacted to further worsen activity avoidance.

| Coping versus fatalism
Participants shared a range of thoughts about breathlessness including normalising it, being content with their current state, and having a sense of accepting their inevitable demise due to their breathlessness. This fatalism compounded the poor health seeking behaviour of several participants who required external pressures from family or friends to seek help from health professionals.

| Feeling misunderstood by those around them and by healthcare providers
Families, friends, and the general public were reported to respond differently to breathlessness. When visiting their health providers, participants reported feeling that breathlessness was a "forgotten issue" and not raised during health check-ups or their consultations. Participants however encouraged others to talk to their general practitioner (GP) regarding their breathlessness and emphasised the need for health provider education to raise breathlessness including having it as part of annual checks.

| Discontinuity of care
Participants reported poor continuity of care within and between specialties. Participants hypothesised this was due to the relatively rapid turnover of doctors, breaking down the doctor-patient relationship. They expressed mixed feelings on trusting the diagnosis from their health providers. Some had experienced substantial delays in getting assessed, while others felt they had been diagnosed too quickly, before a cause had been fully investigated. These situations were felt to be worse in the regional areas. Participants acknowledged the time constraints in practice as a barrier to a complete assessment. However, some felt they were not adequately assessed in primary care even following multiple visits which they F I G U R E 1 Summary of participants' identified gaps and their suggested solutions. Yellow lines show the linkages between the identified gaps, and black lines identify possible points of intervention for suggested solutions.
T A B L E 2 Themes and selected quotes relating to them. Discontinuity of care and knowledge gaps It's hard to get the same doctor every time. It's hard to build rapport and need to explain it again and again even in the same practice. (Participant 8, Female) The sleep, lung and GP did not link, no one seem to be connected and investigate another area rather than their particular niche. (Participant 5, Male) Not sure how popular it is for people to come with this complaint, doesn't seem to be an avenue they can take to refer us for support, (the doctors) need to have some method that they can refer to ….  Diagnosis of chronic breathlessness Low utilisation of spirometry to aid diagnosis of chronic breathlessness-related diseases Community diagnostic centres where GPs can refer to Opening up direct referral to hospital-based spirometry for GPs Concerns of misdiagnosis by participants with rare conditions such as scleroderma and common ones such as asthma Providing greater access to further diagnostic tests which are not always accessible in primary care as reported in prior studies with Australian GPs and specialists 7,8 Formation of breathlessness referral services 9 to enable integrated assessment Provide primary care greater support, including digital resources and decision support systems 8

Management of chronic breathlessness
Lack of nonpharmacologic support as adjuncts to treatment Previous studies have reported simple tools such as a hand-held fan to relieve breathlessness 10 Greater access to allied health and other nonphysician health professional deliver this support in addition to vital nonpharmacologic therapies such as pulmonary rehabilitation which significantly improve clinical outcomes 11 Lack of action plans and patient education materials Development of breathlessness action plans Development of high-quality patient education materials and apps for breathlessness self-management 12 hypothesised may be due to a knowledge gap regarding diagnostic tests such as spirometry. Others appreciated the GPs doing the maximum that they can and encouraged people to find a doctor that listens and understands breathlessness. Even so, not all participants adhered to referrals for diagnostic purposes from their GP. Participants raised the need for a clinical pathway for breathlessness for doctors, which would also include details of community-based support services. They felt that the doctors were not adequately informed regarding where they and their patients can go for this information.

| Demand for choice, nonpharmacologic options, and support
Participants wanted choice and support, especially for nonpharmacologic options that could improve their situation but felt they were not being offered. Many also conveyed the importance of improving their general health and well-being via nutrition and physical activity advice, while acknowledging this may entail extra expense.
Participants were aware of the chronic and at times terminal nature of their condition. They accepted the "inevitable" but would like their doctors to focus on relieving their symptoms. They wanted doctors to go beyond the physical and show care about the mental impacts of breathlessness.

| Self-management and the limited support for it
All participants were keen to better understand their disease including practical ways to feel better. Participants believed being more aware of causes would enable them to do something about it. They also wanted access to someone to talk to about their disease, be educated about their disease, and provide a self-management plan to help them feel more in control and functional. Most felt they did not receive adequate and relevant self-management information and support but reported that learning from nonmedical sources, peers, and other patient bodies was beneficial.

| DISCUSSION
Overall, the themes identified in this study 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. This substantially impacts their clinical outcomes and quality of life. Problems and possible solutions evaluated in studies are described in Table 3.

| Strength and limitations
A strength of this study is the diverse group of participants undertaking interviews focused on the breathlessness experience rather than the causal disease, allowing thematic saturation to be reached despite the variety of underlying clinical causes. Limitations include the relatively small number of participants from minority ethnic communities and only two carers; hence, more studies are needed to fully understand their perspectives and needs. Furthermore, we were unable to include patients with breathlessness due to conditions such as neuromuscular disorders though a previous study 13 in the United Kingdom have suggested similar experiences with regard to stigma, delays in diagnosis, and loss of independence.

| CONCLUSION
Patients with chronic breathlessness suffer from lack of awareness, discontinuity of care, and too few clinical and self-management options. 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 to empower patients to self-manage.