Perspectives of primary care and community clinicians on chronic breathlessness management

Abstract

Background

Chronic breathlessness is a prevalent and debilitating symptom affecting people with chronic respiratory disease. However, community management of chronic breathlessness is limited. Further research is needed to determine how breathlessness care can best be delivered in primary care, identify knowledge and training gaps, and determine what resources might support such a model. This study explored the perspectives of Australian primary and community care clinicians regarding the management of chronic breathlessness, including barriers and facilitators to symptom-directed care.

Methods

Semistructured interviews were conducted with clinicians from primary care and community settings within Australia. Data were analysed using a deductive thematic approach.

Results

16 participants from diverse practice settings and roles were recruited from southern and eastern Australia. Five key themes emerged regarding community management of chronic breathlessness: invisibility; uncertainty, inflexibility and discomfort; roles and engagement with care; information and communication; and health systems and structures. Participants identified under-recognition, under-reporting and inappropriate normalisation of breathlessness as barriers to management, and physical, diagnostic and financial barriers that limited patient access to healthcare. Participants expressed interest in a targeted education programme focusing on assessment and management of chronic breathlessness, and indicated a willingness to engage in such professional development opportunities.

Conclusions

Managing chronic breathlessness is a complex task, characterised by several patient-, clinician- and system-related barriers that hinder effective clinical care. Primary care and community clinicians described significant challenges in managing chronic breathlessness, and desire education and support to better help people with this debilitating symptom.

Shareable abstract

Chronic breathlessness is common and requires specialised management. Primary and community care clinicians are well placed to care for people with breathlessness but desire additional resources and support to do so as found in this qualitative study. https://bit.ly/4bHXk5G

Introduction

Chronic breathlessness is shortness of breath persisting beyond several weeks [1]. The chronic breathlessness syndrome is further defined as “the experience of breathlessness that persists despite optimal treatment of the underlying pathophysiology and resulting in disability” [2]. While commonly caused by respiratory conditions, other causes of chronic breathlessness include heart disease, obesity and psychological illness, with multimorbidity being common [2, 3]. Breathlessness is highly prevalent, with almost 10% of the global population affected by chronic breathlessness of any severity [4].

For the individual patient, chronic breathlessness is distressing and results in marked restrictions on physical, recreational and social activities [5]. At a healthcare system level, breathlessness significantly impacts healthcare utilisation. Australian data suggest that one in seven ambulance presentations to emergency departments in the state of Victoria are driven by dyspnoea, with nearly 80% of such presentations resulting in hospital admission [6]. Similarly, data from the UK indicate that one in five ambulance presentations to the emergency department of a tertiary hospital were driven by an exacerbation of chronic breathlessness [7]. In the primary care setting many people affected by COPD experience breathlessness, with 82% reporting at least mild dyspnoea and nearly half describing moderate-to-severe breathlessness [8].

Chronic breathlessness is challenging to treat despite its prevalence and impact. Recent guidelines from the European Respiratory Society highlighted that chronic breathlessness is often under-recognised and under-treated, and identified that current effective strategies are predominantly non-pharmacological [9]. Importantly, a skilled workforce is required to teach patients how to effectively use such strategies as part of self-management [9]. However, specialist trainees in respiratory medicine struggle to discuss breathlessness with their patients due to lack of time and perceived knowledge [10], respiratory physicians report gaps in their knowledge and experience related to managing chronic breathlessness [11], and junior doctors desire further training to manage severe lung diseases [12]. Furthermore, general practitioners (GPs) also report that managing chronic breathlessness in people with COPD is challenging [13].

In response to these challenges, a small number of hospital-based, specialist breathlessness services have been established in some countries [14–17], with positive outcomes demonstrated by providing individually tailored support to patients. However, few breathlessness services exist in Australia [18], which can result in limited access and long waiting times. Importantly, to date there are no breathlessness clinics based within primary care either in Australia or internationally. This approach would enable patients to receive breathlessness support closer to home from trusted clinicians, thus improving accessibility and enabling people to receive care locally. Further research is needed to determine how breathlessness care can best be delivered in primary care, identify knowledge and training gaps, and determine what resources might support such a model.

This study therefore aimed to explore the knowledge and perspectives of primary and community care clinicians regarding chronic breathlessness management in the community. Specifically, we aimed to 1) understand how primary and community care clinicians currently approach and manage chronic breathlessness and what local services are available; 2) consider barriers and facilitators to optimising primary care breathlessness management; 3) understand what resources are utilised and required; and 4) identify education and training needs. This study was conducted as forerunner work for the Primary Breathe Australia 5-year research programme funded by the Australian Government Medical Research Future Fund, which aims to improve the management of breathlessness in primary care in Australia [19].

Methods

Study design, setting participants and recruitment

A qualitative study was undertaken with clinicians working in primary care or the community, with a particular focus on those who had experience caring for people with chronic breathlessness and cardiorespiratory illnesses. Participants were identified and recruited through multiple sources, including promotion through specialty meetings, direct invitation of participants via professional, clinical and research networks of the research team, and snowball distribution by study participants to their colleagues. We purposefully aimed to recruit participants from metropolitan, regional and rural practices across southern and eastern Australia and from diverse clinical roles (i.e. GPs, primary care nurses, hospital outreach nurses, community respiratory nurses and pharmacists). Sampling was continued until thematic saturation was achieved and no new meaningful information was identified during data analysis.

To be eligible for inclusion, participants were required to be working as a primary care or community clinician in Australia, English-speaking and able to provide informed consent. Participants were provided with information regarding the purpose and process of the study and gave informed consent prior to interview. An honorarium (AUD 100 gift card) was given to each participant upon completion of their interview.

Data collection and analysis

One-on-one interviews were conducted via Zoom video-conferencing or telephone between September 2022 and October 2023. A single, semistructured interview of 35–90 min duration was conducted by one of two trained female researchers (E.B. or L.L.), with field notes completed during interviews. E.B. is a doctor with 9 years of clinical experience and was undertaking her specialist training in palliative medicine while completing this study. L.L. is a PhD candidate with experience in conducting qualitative research. N.S. is a senior respiratory physician who leads an integrated respiratory and palliative care service, and is Head of the Chronic Respiratory Disease research group at Monash University (Melbourne, Australia). While some participants were recruited via professional networks of the senior author (N.S.), no professional relationships existed between the interviewers (E.B. and L.L.) and participants.

No suitable topic guide was identified in the literature, and so development of the interview topic guide was informed by expert consensus and literature. Key questions covered: participants’ demographic information and role, pharmacological and non-pharmacological approaches to breathlessness management, programmes or services available locally for breathless patients, clinician roles in managing breathlessness, barriers and facilitators to optimising primary care breathlessness management, guidelines and educational tools, training needs, and models of care required.

An epistemological position of interpretivism with a phenomenological approach was adopted to explore the knowledge and experiences of community clinicians who care for patients with chronic breathlessness. Trustworthiness was promoted during the study process through use of a standardised interview topic guide and trained interviewers, frequent meetings between study authors throughout the stages of data collection, analysis and manuscript development, and through awareness and acknowledgement of author reflexivity throughout the process.

Interviews were audio-recorded and transcribed verbatim. Participants did not request interview transcripts for comment or correction, or provide feedback on the study findings. Two study authors (E.B. and L.L.) coded the de-identified transcripts using NVivo 13 qualitative data analysis software [20]. An initial transcript was pair-coded by E.B. and L.L., with half of subsequent transcripts co-coded by L.L. and E.B. and the other half individually coded by E.B. with resulting findings discussed during regular meetings. Data were coded and analysed utilising thematic analysis underpinned by a deductive approach [21] informed by review of existing literature, with acknowledgement of the reflexive nature of qualitative research.

To minimise the potential impact of researchers’ subjectivity, codes and themes were discussed and agreed upon by consensus among the study authors during regular meetings throughout the study. Ethics approval was granted by the Monash University Human Research Ethics Committee (Project ID 31787). The manuscript was developed utilising the COREQ (Consolidated Criteria for Reporting Qualitative Research) framework [22], a validated framework for the reporting of qualitative research.

Results

Of the 30 clinicians who initially responded to recruitment activities, 16 clinicians consented and participated in this study after receiving further detailed information on the study. The resulting data collected were rich enough to answer the research question; thus, no further recruitment was conducted. For the 14 clinicians who did not participate this was principally because a suitable time could not be found for the interview within their busy work schedules or as there was no response following receipt of further study information.

On average, participants were 41 years old and 69% were women (table 1). Five themes were developed from the interviews regarding chronic breathlessness, including: 1) invisibility; 2) uncertainty, inflexibility and discomfort; 3) roles and engagement with care; 4) information and communication; and 5) health systems and structures (figure 1).

TABLE 1.

Participant characteristics (n=16)

Profession
General practitioner	9 (56)
Nurse	6 (38)
Hospital-employed, community-based chronic care nurse (3 participants)
Chronic care coordinator (1 participant)
Primary care practice nurse (1 participant)
Respiratory care nurse (1 participant)
Pharmacist	1 (6)
Gender
Female	11 (69)
Male	5 (31)
Age (years)
30–40	7 (44)
41–50	2 (13)
51–60	1 (6)
>61	4 (25)
Not stated	2 (13)
Time in practice (years)
1–5	2 (13)
6–10	4 (25)
11–15	3 (19)
16–20	2 (13)
21–29	0 (0)
≥30	5 (31)
Region
Metropolitan	11 (69)
Regional	3 (19)
Rural	2 (12)
Australian state
Victoria	11 (69)
New South Wales	3 (19)
South Australia	1 (6)
Queensland	1 (6)

Data are presented as n (%).

FIGURE 1.

Themes and subthemes.

Theme 1: invisibility

Participants reported that chronic breathlessness is common but invisible, being often under-recognised, under-reported or inappropriately normalised by patients (table 2). They highlighted that patients “don't recognise how breathless they are”, and rarely report their experiences of chronic breathlessness unless directly prompted or asked to physically demonstrate their exercise tolerance. Participants found that clearly breathless patients would frequently highlight other issues that they wished to address during their time with the clinician, thus under-reporting the impact of their breathlessness.

TABLE 2.

Theme 1: invisibility

Subthemes	Quotes
Invisible symptoms	“I think breathlessness isn't well seen in the community as a major problem, but for those who have it, it's significant for them. And I think people don't recognise how breathless they are, because they just adjust their lives towards the breathlessness.” (P24: female GP, 15 years in practice) “We've been talking about chronic breathlessness for a few years now. And I sit there, and I think, I don't think that's what patients present with. We find out that they are breathless. But they don't present with that, you know. It's only when you ask them ‘Oh well you know, what are the things that you can do around, that you can't do around the house’.” (P12: female GP, 37 years in practice)
Under-reported disability	“… Because people … are so stoic, and because people have this chronic breathlessness, they're so used to it and they've lived with it for this long, and if you actually ask someone who's lived with it for however long, they at times downplay it, they go, ‘Yeah this is, yeah it's okay’. But if you watch them walk the 50 metres or something, then you can get a really objective view rather than their subjective answer.” (P20: female nurse/chronic care coordinator, 15 years in practice)
Inappropriate normalisation of breathlessness	“I find they don't normally come in going, ‘I'm short of breath all of the time’, particularly people that are chronically breathless … I think they just accept that this is how it is, and they are just so used to being chronically breathless they don't often bring that to the table unless it is directly asked.” (P22: female GP, 2 years in practice) “I feel that there's not enough sort of, emphasis, sort of placed on the fact that it's not just normal to live with this breathlessness all the time, and there are – there are things that we can do.” (P20: female nurse/chronic care coordinator, 15 years in practice)
Self-management	“They wouldn't really tell me I think if they got more short of breath. They'd just maybe up [their medications] a bit, if they were short of breath, themselves. And have more Ventolin. It's quite tricky getting them back just for that ‘cos I think they feel like it's something they can manage and change with themselves.” (P13: female GP, 18 years in practice)

GP: general practitioner.

Some participants indicated that patients often self-managed their symptoms at home rather than seeking help. Clinicians postulated that this occurred as patients “feel like it's something they can manage” independently, hindering clinicians’ abilities to assess and assist breathless patients as they are unable to assess the true severity and impact of chronic breathlessness.

Theme 2: uncertainty, inflexibility and discomfort

While some participants were comfortable caring for people with chronic breathlessness, many clinicians reported uncertainty when assessing symptoms, discomfort in prescribing therapies and frustration at the perceived lack of available treatment options to manage this symptom (table 3).

TABLE 3.

Theme 2: uncertainty, inflexibility and discomfort

Subthemes	Quotes
Symptom assessment	“The topic of breathlessness is avoided because a lot of clinicians don't actually know how to answer the question of ‘How do I manage breathlessness?’.” (P18: female respiratory care nurse, 30 years in practice) “It's really hard to get a true picture of what's going on from a piece of paper … it's really difficult to get a true picture unless you actually see them moving or see them in their everyday life.” (P20: female nurse/chronic care coordinator, 15 years in practice)
Disease-focused and -directed care	“There were some new heart failure medications, but I never felt confident about commencing those … I mean I'd up-titrate them once they were on them. But … I would never have started this particular heart failure medication that I thought he should be on.” (P12: female GP, 37 years in practice) “It's interesting that there's this emphasis on chronic breathlessness. But I think for GPs we don't think, we don't think of that … I know that that's the symptom. We're thinking of the disease state.” (P12: female GP, 37 years in practice)
Multimorbidity leading to uncertainty	“There is usually a bit of cardiac and a bit of respiratory. … So, you're often juggling two complex disease states. And often they're under the care of two [physician] consultants. And that just makes everything messy.” (P10: male GP, 37 years in practice)
Futility and frustration	“There's often not a lot you can do about it. The people with bad [chronic respiratory disease], they are going to have dyspnoea on exertion and it gradually deteriorates and it needs to be addressed, and I ask them how it's going and they say, ‘It's my breathing, it's shit’ and all the treatments are maximised and there's nothing more you can do about it. That's the frustrating part of it. There's nothing more you can do about it without accelerating their demise and they don't qualify for home oxygen.” (P21: male GP, 30 years in practice) “I think often the cardiac people think ‘Well, you know I've stented them, I've given them a pacemaker, I've upped their medication, but oh well they're just still symptomatic, that's just how it is’.” (P12: female GP, 37 years in practice)
Approaches to symptom management and palliative care	“You feel a bit weird prescribing [people with respiratory issues] a respiratory depressant medication, so you need to address the cognitive barriers to prescribing … if you are asking whether we would use benzodiazepines, and I would say no I don't. You would need to address concerns about interactions with opiates and respiratory depression and whether that's a factor or not, and you need to be very clear if you are talking in terms of palliative care or not.” (P21: male GP, 30 years in practice) “I think sometimes it can be really hard, like I said, to gauge patients’ baseline and what is … an acceptable level of breathlessness to sit with, that is kind of okay and safe or what's like okay, no, like, this is something that needs to be escalated to the hospital or something like that.” (P14: female hospital-employed, community-based chronic care nurse, 8 years in practice) “There is often a lot of kick back from GPs when patients go and ask for referral to palliative care … Because if there's not a fundamental understanding that palliative care, should begin very beginning of the onset of symptom burden and not just end-of-life care, we often find a lot of patients who are only receiving this supportive management of breathlessness at a very late stage, which has a massive impact on their quality of life and mental health.” (P24: female GP, 15 years in practice)

GP: general practitioner.

Assessment of people with chronic breathlessness was noted to be challenging, as “it's really hard to get a true picture of what's going on” with paper-based questionnaires commonly used by clinicians. Clinicians valued seeing patients in their home environment or attempting to mobilise, as this was felt to provide a more accurate indication of their true symptom burden.

Some participants suggested that symptom assessment is limited as “a lot of clinicians don't actually know” how to manage chronic breathlessness. Others expressed significant frustration at the perceived limited treatment options for chronic breathlessness, as “there's nothing more you can do about it” once treatment of the underlying disease is optimised. As such, GPs emphasised the importance of accurate diagnosis and the challenge when multiple specialists are involved giving conflicting opinions on the cause of breathlessness. While participants generally felt comfortable managing disease-directed therapies, some acknowledged the difficulty in staying up to date with new therapies, reflecting the challenges faced by clinicians with significant time pressures.

Some participants expressed concerns regarding prescribing opioids or benzodiazepines for palliation of breathlessness. Many participants also voiced inexperience about providing end-of-life care, or uncertainty when to escalate care, as it is challenging to identify “an acceptable level of breathlessness to sit with”. Participants with experience in providing palliative and end-of-life care expressed frustration that palliative care is often only involved late in an individual's illness, and patients “only receive this supportive management of breathlessness at a very late stage”.

Theme 3: roles and engagement with care

Participants recognised that patient and carer engagement was essential for effective management of chronic breathlessness, and that management must be “approached together” with the patient, their carer and clinicians. Effective care was noted to be “limited by whether the patient's engaged”, with some patients living “with a higher burden of breathlessness” due to previous negative experiences with healthcare services and subsequent decreased engagement (table 4).

TABLE 4.

Theme 3: roles and engagement with care

Subthemes	Quotes
Engagement with care	“We're all sort of limited by whether the patient's engaged – and I think, especially adjusting expectations.” (P17: male GP, 9 years in practice) “She … had negative experiences with pulmonary rehab, so as a result is very reluctant to re-engage with that service. So I think [she] lives with probably a higher burden of breathlessness than she could, because of her fear of another negative experience with a particular service.” (P19: female hospital-employed, community-based chronic care nurse, 8 years in practice)
Patient role in managing disease	“And it does need to be with the involvement of the patient. They're the ones that know the most about their breathlessness, they're the ones experiencing and living with it for a long period of time. So, I guess it has to be something that we all approach together.” (P9: female hospital-employed, community-based chronic care nurse, 8 years in practice)
Clinician roles in managing disease	“I usually refer on to a respiratory physician, if the diagnosis is not clear to me, and that's usually after I've tried a few pharmacological treatments and so if I need help with treatment, or if I need help with diagnosis, essentially I refer them on.” (P23: female GP, 15 years in practice) “As a pharmacist, a big part of what I'm doing is more about making sure we rule out any potential pharmacological contributions.” (P16: male pharmacist, 5 years in practice) “The first thing is for those patients who are prescribed inhalers, we go back to the very basics. Do they understand the role of their medications, do they take them every day as prescribed, have they had their delivery device technique checked? So we go back through the very basic fundamentals rather than assuming that if they are prescribed inhalers, that they take them every day.” (P18: female respiratory care nurse, 30 years in practice)
Primacy of primary care	“… it has to be in primary care. The hospital system can't cope with all the chronic breathlessness patients in the universe. It's gotta happen out in the community … once the diagnosis is established.” (P10: male GP, 37 years in practice)
Shared and multidisciplinary care	“I really appreciate the shared care set-up, it's good. So, shared care means not just … literally everyone gets to see the person but also direct communication between primary care and tertiary care. So, having a hotline that GPs can ring or when the patients present and giving them some direct advice in terms of what to do next.” (P17: male GP, 9 years in practice) “For GPs to be involved heavily in the shared care arrangement of chronic severe breathlessness, they need to be working full-time or close to that, and probably be available after hours.” (P11: female GP, 19 years in practice) “It's multidisciplinary approach. It's that coordination of care between physiotherapist, exercise physiologist, respiratory specialist and GP … There's not just one person's job. And obviously palliative care plays a role in that as well.” (P18: female respiratory care nurse, 30 years in practice)

GP: general practitioner.

The importance of different clinical roles and approaches was also highlighted, which further reinforced the importance of shared care and the multidisciplinary team. Most participants highlighted the need for a community-based, multidisciplinary approach to chronic breathlessness management, as care of this complex symptom is “not just one person's job” and “has gotta happen out in the community”.

Clinicians supported patients variously through pharmacological and non-pharmacological means, including diagnosing and optimising underlying conditions, reviewing medications, developing action plans, managing comorbid anxiety, supporting smoking cessation, optimising inhaler technique, improving mobility and exertion management, providing oxygen therapy, and teaching breathing techniques. Where needed, patients would be referred on for additional reviews from specialists and allied health.

Clinicians were generally in favour of shared care models, with community clinicians providing the majority of care with support from specialists when required. However, some clinicians indicated that working part-time, or an inability to provide after-hours or home visits, may hinder the ability of clinicians in the primary and community care sector to fully support patients with chronic breathlessness due to a lack of care continuity.

Theme 4: information and communication

When discussing the management of chronic breathlessness, participants discussed the importance of clearly communicating information to patients, other clinicians, family members and the community (table 5). They highlighted the burden and frustration associated with information overload among clinicians, and the pressure they face to remain up to date with evolving literature and treatment guidelines for the management of many conditions and symptoms.

TABLE 5.

Theme 4: information and communication

Subthemes	Quotes
Clinical care conversations	“They need to know what's happening. ‘This is what you're going to feel when you start this’, or you know, ‘If you're feeling this, then you need to do this, then you need to be able to do this in this way’, … doesn't matter whether you're a lawyer or a cleaner, if you keep it simple, they'll more than likely … do the appropriate management for themselves as well.” (P15: male primary care nurse, 30 years in practice) “One of the barriers is that there's a lack of knowledge for patients, that don't speak English as their first language or different cultural backgrounds … there's a lack of knowledge about the extent of the disease or the specifics of the illness they have, and as a result it's almost like they're naïve to it and as a result might not engage in more services or programmes to, to benefit their breathing.” (P19: female hospital-employed, community-based chronic care nurse, 8 years in practice)
Planning for the future	“I find that that's one thing that hospitals, specialists, they all put back on me that I have to do advanced care plan, even though the patient has been in hospital for six weeks and quite sick and they've said there's no other treatment options, instead of doing the advanced care plan with them and explaining, ‘You know, well, we're at this point where there isn't any more treatment options, so how do we make you well?’. In saying that, though, doing an advanced care directive means that I can advocate for my patient.” (P24: female GP, 15 years in practice)
Information overload for clinicians	“We get completely bombarded with information all the time, so if it's long and wordy you just have to move on, you can't do it.” (P11: female GP, 19 years in practice)
Education and digital resources	“I think [an education programme for chronic breathlessness] would be amazing. Because it's that classic education creed, ‘I know what I know. I have no idea what I don't know’. So, I think these sorts of things are great for doing that exposure … and the idea of symptom-based education is kind of cool.” (P16: male pharmacist, 5 years in practice) “I think [an education programme] would be of some interest, but you would have to be clear. It wouldn't be an easy topic to sell. I think it will be hard to make it compete with other things that GPs might be going out and learning more about.” (P21: male GP, 30 years in practice) “If there was an app coming, I'd be very, very interested in it.” (P23: female GP, 15 years in practice) “I think a patient-based app would be very useful, but a doctor-based app is not really useful in general practice, because there's obviously a million conditions we see, and you can't have apps on your phone for all that … but I definitely feel that an app for patients to use, which maybe the doctor can be involved with, with action plans and checklists and optimising health and different breathing techniques, would be useful, definitely.” (P11: female GP, 19 years in practice)

GP: general practitioner.

Participants emphasised the need to “keep it simple” when explaining the natural history, management and prognosis of chronic breathlessness to patients. Limited health literacy was identified as a barrier to effective management, and as such the development of digital resources for patients was positively viewed.

When discussing the role of guidelines and resources for chronic breathlessness management, some participants voiced concerns about development of additional guidelines, as GPs are “completely bombarded with information all the time”; however, many felt that streamlining or collating existing guidelines may help ease this burden. Similarly, while many participants desired further training to manage chronic breathlessness, the challenge of competing educational demands for GPs was noted.

Theme 5: health systems and structures

Participants acknowledged that people with chronic breathlessness have complex needs which are inadequately addressed by existing models of care (table 6).

TABLE 6.

Theme 5: health systems and structures

Subthemes	Quotes
Access to healthcare	“I did this spirometry workshop in [regional city]. One of the co-presenters worked at [a major metropolitan centre]. And was going on and on about ‘Get your respiratory physician to do this’, and ‘Get your respiratory physician to do that’, and one of the practice nurses from a small country centre said, ‘Bugger a respiratory physician, we'd be happy to have a doctor’.” (P10: male GP, 37 years in practice) “Every patient you refer to [town name] Hospital has got one complaint: nowhere to park. And so, for breathless patients, that's catastrophic. … if they can't park near where they want to go, they won't go.” (P10: male GP, 37 years in practice) “Being able to contact a specialist and get advice quickly has been really good and I have a great network of specialists that I can do that.” (P24: female GP, 15 years in practice)
Cost	“The barrier is that coming back in, our practice doesn't bulk bill so, coming back in for follow up is made sometimes financially difficult” (P13: female GP, 18 years in practice) “Referrals for allied health are expensive and timely and people with chronic breathlessness already have financial impacts, they are anxious to leave the home, they may not have access to oxygen equipment, they might be living three or four hours from any supportive care and their oxygen cylinder might only last for two hours depending on their prescription.” (P18: female respiratory care nurse, 30 years in practice)
Timely care	“The barrier's not being able to access expert respiratory medicine advice … That patients with severe COPD will potentially have appointments maybe every three to four months. And then they'll get cancelled and it'll be another three to four months before they get their next appointment. And they don't know, and I don't know, when that appointment is. All they know is their appointment's been cancelled.” (P12: female GP, 37 years in practice)
Time and availability	“The real issue in primary care is not having enough time to turn your mind to the problem. So, it's very easy to write a letter to a respiratory physician and the cardiologist if you've got somebody who's breathless.” (P10: male GP, 37 years in practice) “Maybe having someone like a diabetes educator, but for respiratory illness would be great. Because I think education is so important, and it takes the longest, and we just don't have the time to do it really comprehensively in a situation where the patients really can take in everything that we're saying,” (P23: female GP, 15 years in practice)
Disconnected care and communication between specialists	“So, sometimes there are multiple teams involved, and then sometimes it feels like you can't work out why other teams aren't involved, or no one's really asked about that … it's quite unclear and varied.” (P9: female hospital-employed, community-based chronic care nurse, 8 years in practice) “[Patients are] split between seeing us and seeing specialists. Delays in receiving letters back. Sometimes they are on the day and sometimes they might be a couple of weeks later.” (P22: female GP, 2 years in practice)

GP: general practitioner.

They identified supports that benefit people with chronic breathlessness (including but not limited to access to multidisciplinary team members and specialists, pulmonary or cardiac rehabilitation services, Hospital Admission Risk Programmes and hospital breathlessness clinics), but often encounter significant wait times or unclear referral pathways.

Where these services are available people with chronic breathlessness face additional challenges to access them, including lack of parking (“catastrophic” for the breathless patient), lack of bulk billing (making seeking medical care “financially difficult”) and reliance on oxygen. These challenges were particularly pronounced for patients living in rural and remote areas.

From a clinician perspective, insufficient time to manage complex issues during short consultations was identified as a barrier to providing good clinical care. The challenges of having multiple specialist teams involved in patient care and poor communication were also noted; however, participants valued the ability to contact specialist physicians for advice when needed.

Discussion

This study explored the perceptions of Australian GPs and community health professionals regarding the management of people with chronic breathlessness. The five themes that were developed during analysis (invisibility; uncertainty, inflexibility and discomfort; roles and engagement with care; information and communication; and health systems and structures) reflect the challenges participants described when managing chronic breathlessness in the community.

Assessing breathlessness in primary care

Our findings align with past research describing invisibility and under-reporting of breathlessness [23, 24]. Chronic breathlessness is challenging to assess and manage [13], and there is often discordance between patient perspective and clinician assessment of dyspnoea [25]. The onset of chronic breathlessness may be gradual and thus inappropriately normalised, or minimised by the sufferer as a manner of coping with the physical and emotional distress associated with dyspnoea [26]. For those who do seek medical attention for breathlessness, their assessment may be affected by an unwillingness to repeat their history to multiple different clinicians or experiences of feeling ignored [26].

Participants in our study described many barriers to managing chronic breathlessness in the community including: limited time and availability of services, lack of knowledge, and uncertainty or inexperience managing complex symptoms. Past surveys of GPs, junior doctors, advanced trainees and respiratory physicians have highlighted similar issues [10, 11, 13]. Specialist respiratory trainees struggle to discuss breathlessness with their patients for multiple reasons, including a perceived inability to help, lack of awareness about potential supports and services, and inadequate time during the consultation [10]. In one study, nearly 25% of surveyed respiratory specialists did not feel that they had sufficient knowledge to manage people with chronic breathlessness [11]. GPs also find it challenging to manage chronic breathlessness, and report limited experience and knowledge in the use of non-pharmacological and pharmacological breathlessness management strategies [13]. Similar themes were expressed by participants in our study, which has provided greater insight into the challenges faced by this cohort of clinicians.

Participants indicated that assessment tools can fail to capture the extent of a patient's symptoms. Breathlessness assessment is complex; numerous breathlessness assessment tools are available [27, 28], and range from simple intensity measurements, such as the visual analogue scale or Borg scale, to complex tools, such as the Dyspnoea-12 scale designed for research [28, 29]. The choice of tool depends on the component of breathlessness to be assessed, what resources are available to the assessor and whether the symptom is being assessed once or on multiple occasions [28].

Supporting breathlessness education

Most participants in our study indicated a willingness to manage and support people with chronic breathlessness but reported gaps in knowledge or uncertainty, and desired further education. Importantly, clinician training programmes focused on chronic breathlessness management do exist. The “Breathing, Thinking, Functioning (BTF)” model of breathlessness management was developed by the Cambridge Breathlessness Intervention Service as an educational tool to support breathlessness management [30]. A 1-day virtual or in-person “BTF” study programme comprising lectures and workshops is available to health professionals with an interest in chronic breathlessness, and results in significant and sustained improvements in experience and confidence in managing breathlessness among attendees [31, 32]. Similarly, a 3-day programme developed around the same model resulted in improvement in self-reported familiarity and confidence in management, changed key attitudes towards breathlessness among participants, and facilitated plans to change practice [33]. New, short courses focused on breathlessness management for primary care clinicians therefore warrant consideration.

When asked about the development of new guidelines and mobile support tools, many participants felt that existing guidelines and information needed to be more easily accessible online. Patient utilisation of digital health resources such as mobile phone applications has been shown to result in higher levels of self-management of chronic disease [34, 35]. Furthermore, information overload has been recognised as a growing issue in healthcare since the 20th century and is an increasing source of stress among clinicians [36, 37]. Embedding information or summaries of key guidelines (e.g. the European Respiratory Society guideline on symptom management in serious respiratory illness [9]) within primary care electronic medical records to support decision making represents a possible solution to this challenge.

Comparable care models

A consensus definition for chronic breathlessness syndrome was developed to facilitate increased awareness, research and management [2]. The syndrome has been compared to that of chronic pain [38]. Both are subjective, debilitating and significantly impact quality of life; relief from pain has been recognised as a human right [39], and there are calls to afford relief from chronic breathlessness the same recognition [40]. Primary care clinicians report similar barriers when managing chronic pain and highlight the nuances of pain assessment, need for non-pharmacological pain management, and the benefits of access to multidisciplinary and specialist care [41].

While there remains a gap between the recognition of chronic breathlessness and chronic pain in surveyed clinicians [42], existing models for chronic pain management could be adapted as a model of management for chronic breathlessness. Both conditions share a number of management features, including a need for multimodal care, multi- and interdisciplinary care, self-management support, and treatment in the outpatient setting [43].

Future models of care

There is growing recognition that people with chronic breathlessness need a dedicated management approach to minimise symptom burden, alleviate distress and improve quality of life [44]. Importantly, in light of recent evidence and recommendations this approach should include a comprehensive assessment and focus on non-pharmacological symptom management strategies (e.g. breathing techniques, airflow and graded exercise therapy), with recommendations against prescribing opioids for dyspnoea [9, 45]. Ideally, such an approach to breathlessness management should involve multidisciplinary healthcare professionals, with the involvement of primary care clinicians critical given patients visit GPs more frequently than specialist physicians [46–48]. Although prior health economic assessments of people with chronic breathlessness have revealed patient preference against in-person breathlessness support through their GPs [49], recent work indicates that patients now desire breathlessness management support in the primary care setting [50].

Primary care clinicians could be supported to better manage breathlessness through shared care models involving specialist breathlessness services. Such specialist breathlessness services have been implemented in many settings, including home-based, hospice-based and hospital outpatient models [51–53], and involve a team-based approach (physicians, nurses and allied health professionals) spanning respiratory medicine and palliative care [53]. Patient engagement with these services has been demonstrated to result in improved breathlessness mastery and quality of life [14, 51, 54]. Shared breathlessness care could include a limited number of patient visits (in-person or by telehealth) to a specialist breathlessness clinic, case conferencing, telephone support and hospital outreach to support primary care clinicians. However, it must be noted that specialist breathlessness services are currently limited in number, highlighting the immense need for increased investment in breathlessness management in primary, secondary and tertiary care. To address this, two parallel 5-year projects of research are currently active in Australia [19] and the UK [55], which aim to co-design and evaluate a breathlessness management approach embedded in the primary care setting through separate clinical trials and process evaluations.

Strengths and limitations

Our study adds to the growing body of knowledge addressing the challenges of management of chronic breathlessness in primary care. To the best of our knowledge, our study is the first to specifically explore the role and perspectives of community GPs, nurses and pharmacists in new models of breathlessness care and their educational needs. Qualitative research provides insight into the beliefs, experiences and behaviours of study participants, and can lead to the development of interventions to address identified concerns [56]; this is crucial when investigating community management of chronic breathlessness, where many stakeholders in various roles have an interest in improving current care delivery. A limitation of this study is the lack of participation by community-based allied health professionals. We attempted to recruit a broad sample of clinicians working in primary care through diverse recruitment approaches; however, none responded to the study advertisements. Our study otherwise included clinicians from diverse health backgrounds with first-hand experience caring for people with chronic breathlessness. Our study was conducted in English with English-speaking participants, which may reduce the generalisability to other populations. However, we purposefully included clinicians working across eastern and southern Australia (which are geographically vast) with some participants working in regional and rural areas in order to capture more diverse perspectives and experiences.

Conclusions

Primary care clinicians are optimally placed and willing to manage chronic breathlessness but identified a number of barriers to optimal management. Interventions are needed to improve recognition of chronic breathlessness, access to education and resources, and communication between healthcare professionals. Further research is required to investigate the model of breathlessness care spanning primary and secondary care, which may have the potential to overcome current challenges to optimal symptom management.