In total, 35 participants were interviewed (20 patients, 5 carers, lasting between 17 and 140 min; 10 clinicians lasting between 26 and 55 min). Most patients reported experiencing long-term chronic breathlessness (several years). Most reported worsening of breathlessness over time.

Participant characteristics are summarised in Tables 1 and 2.

Table 1 Participant Characteristics (Patients, carers).Table 2 Clinician characteristics.

Four main themes were developed with sub-themes (see Table 3). Application of theoretical framework domains has also been detailed here.

Table 3 Themes and Sub-themes.Theme 1: Widespread negative impact of chronic breathlessness

Chronic breathlessness has a widespread negative impact on older, frail adults and their carers, adversely affecting psychological wellbeing and quality-of-life. The impact is all-encompassing, affecting all parts of the individual’s life. Patients report depression, anxiety and stress, and carers report feeling frightened, useless, and overwhelmed.

“Well it sometimes it [the breathlessness] makes me, real down but I don’t try and get, you know what I mean I try and pick myself up and that and think oh well, it’s, it’s the condition, you’ve gotta get on with it so.” (Patient 1, Female, 70 years; Total Dyspnea – psychological)

“…..and that’s when I said, what three in the morning it was,…I’m gonna ring an ambulance because she’s gonna, she looks if she’s gonna die she was (inhales sharply) gasping…You know it’s like, at the time of childbirth you’re stuck out of the room when, …you were stuck out the room and, you did the pacing, you know you’re just, useless.”(Carer 2, Husband of Patient 9; Breathing Space - help-seeking behaviours [in crisis only])

Patients reported how they reduced physical activity and usual activities due to breathlessness. Clinicians also identified how patients reduced physical activities, resulting in a downward cycle of deconditioning.

“…I can’t get about, without help. So it’s, you know it’s extremely…debilitating.” (Patient 3, Female, 69; Total Dyspnea - physical)

“Well they just keep they just restrict their life further and further, ‘cause they worry more and more about their breathlessness and…their world kind of shrinks doesn’t it, they used to be able to walk down to the shops, now they can’t so they only get halfway so they don’t bother. And then because they’re not doing anything or exercising they can do less so then they’re stuck in the house. And it’s just a downward spiral basically.” (Clinician 1, GPwER; Total Dyspnea – physical, psychological, social)

Patients reported a negative social impact resulting from chronic breathlessness, relating to not getting out much on their own, or reduction in hobbies and activities. One participant reflected on how their whole world had transformed.

“…I’m living in a ‘no world’ now. There’s no decent food, there’s no alcohol, there’s no sex, there’s no driving, you know. Everything is a no.” (Patient 15, Male, 78; Total Dyspnea – physical, psychological, social)

Despite its widespread negative impact, chronic breathlessness becomes a solitary burden, whereby patients prefer not to share with family/friends, mainly to avoid upsetting others.

“…our children are in their fifties now. But they’re still our children. And, you know it is silly I know, but, you want to protect them still. So, you don’t tend to tell them about your ailments…it’s not something as a family, we would talk about…unless there was an emergency. And then we would.” (Carer 4, Wife of Patient 15)

Theme 2: Barriers to optimal health-seeking behaviour and identification of chronic breathlessness

There were considerable barriers to effective identification of chronic breathlessness, these relate to the experiences of identification/assessment, experiences of barriers to effective identification of chronic breathlessness, and use of ‘chronic breathlessness’ terminology.

Experiences of identification/assessment

Various forms of identification and assessment were reported by patients and clinicians, from general observation to detailed assessment (usually for people with chronic obstructive pulmonary disease [COPD] where national criteria apply due to the Quality and Outcomes Framework [QOF] – a financial incentive payment in UK primary care). Some patients reported that they had not had their breathlessness assessed at all. Where breathlessness was assessed, the focus appeared to be primarily in assessing the cause(s) of breathlessness in disease terms (e.g., lung function, x-rays), rather than understanding severity/impact of the symptom and using this to direct tailored interventions.

“I literally went for the cough. And I mentioned the breathlessness at the same time you see. And, so she [clinician] sent me for the x-ray.” (Patient 5, Male, 83; Breathing Space – help-seeking behaviours [for persistent breathlessness])

Although in general clinicians appeared confident that concerns about breathlessness would be raised unprompted by the patient, there were examples of good practice regarding symptom-focussed therapy, such as clinicians asking about breathlessness impact. Two clinicians described how they proactively ask their patients about the impact of breathlessness on their lives.

Clinician: “-it is the first question I ask, what does it stop you doing? What could you do, before you were breathless that you can’t do now? Erm, and that brings out, a lot of the, the sort of, problems that they’re getting and, and, and how it’s impacted them.” (Clinician 1, GPwER; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

Clinician: “Well erm…it depends, most patients…if you start it off openly and they get chatting, within the first couple of minutes they’ve basically told you what they can’t do and what they miss doing…it’s one of those things that impacts so profoundly on their life…it can’t help but come out when you’re asking about how they are and what things have happened…it’s life changing.” (Clinician 3, GPwER; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

However, in general, patients reported they are not asked about breathlessness impact and do not volunteer this information. This leads to a ‘don’t ask, don’t tell’ situation. Two patients report whether their clinician asks about impact of breathlessness.

Patient 12: “No they, they never do really no.”

Patient 11: “No not really no they just seem to do these tests…” (Patient 11, Female, 88 and Patient 12, Male 87 – married couple; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to underlying disease only])

Few clinicians reported using breathlessness measures e.g., the mMRC. Where used, this was predominantly by nurses as part of routine chronic disease management (e.g., COPD annual reviews), however for other causes of breathlessness this did not happen.

“And I must admit the, MRC breathlessness scale is probably something that I don’t use quite as often as I should do.” (Clinician 5, ACP)

Experiences of barriers to effective identification of chronic breathlessness

Clinicians report breathlessness as a common symptom which is difficult to manage. For the older, frail adult, breathlessness is often one of many symptoms and not always prioritised by them to mention. As a result, chronic breathlessness may only be reported in moments of crisis.

“I don’t go unless I have to go, unless like, I’m really, out of breath…and I’m wheezing and I’m coughing. That’s when I go. I mean if I’m breathless, I don’t, I don’t bother with them.” (Patient 1, Female, 70; Breathing Space - help-seeking behaviours [in crisis only])

“And the thing is as well I think…because of all the, ailments [patient’s] got, I think the breathing, is the bottom of the pile. So, if we can get in to see a doctor, it’s usually for something else.” (Carer 4, Wife of Patient 15; Breathing Space - patients’ coping [disengaged])

When patients do seek help from primary care, they report difficulty in getting appointments, lack of continuity of care, and lack of time in appointments restricting, either explicitly or implicitly, to ‘one appointment, one problem’. Therefore, if breathlessness is not their most immediately serious symptom, it may not be mentioned at all.

“Nah I mean I think the doctors now they’re that tight for time and, you know you’ve got to be in and out like, it’s like speed dating with the doctor now.” (Carer 2, Husband of Patient 9)

Clinicians expressed frustration at inadequate length of appointments, particularly for chronic condition management in context of poor GP staffing levels in the area (fewer GPs per head of population than the national average).

“…a lot of practices have struggled to recruit so a lot of them have emergency care practitioners, which are great – they’re absolutely excellent for an acute breathlessness – but I think some of the chronic disease work is getting missed.” (Clinician 2, GpwER)

Clinicians report other barriers to reporting breathlessness, such as guilt (relating to smoking). Some patients do not see their primary care clinician for breathlessness at all, due to perceived barriers, previous poor experiences, and loss of faith in clinicians for help with this symptom.

“In fact, unless I’m dying you know unless I’m really ill and then I’d ring 999. I won’t even bother doctor. I’ve no patience nowadays with them.” (Patient 14, Female, 83; Breathing Space - help-seeking behaviours [in crisis only])

Use of ‘chronic breathlessness’ terminology

Patients and carers had limited understanding of ‘chronic breathlessness’ terminology, referring instead to ‘being breathless’. ‘Chronic’ was understood as ‘very severe’ rather than referring to duration, and they did not identify with it, partly because of a sense of inevitability/fatalistic views that nothing could be done to modify breathlessness.

“Yeah, it’s no good it’s, like you were saying chronic, er, breathless syndrome, you can call it COPD, you know, you can call it what you like, it doesn’t alter the facts of what you’ve got, does it?” (Patient 13, Male, 76)

Most patients appeared to conflate breathlessness with their condition rather than consider it in any distinct manner.

“Well it’s got a name hasn’t it, it got COPD, that’s, that is the condition isn’t it, breathlessness.” (Patient 1, Female, 70)

In contrast, clinicians had a good understanding, and were mainly supportive of the terminology. Some participants suggested that a formal definition of chronic breathlessness syndrome would be useful to raise awareness, create access to services and improved management, and legitimise their symptom as a therapeutic target for identification, assessment and management. However, others were concerned at “labelling” patients and the potential to increase anxiety.

“But these people have already got a lot of other things going on, so anything that gives it, more visibility is always gonna help.” (Clinician 6, ACP)

“But I don’t think then, labelling that as a diagnosis in the, problem pages of patients and then they’re going around labelling that and then telling them that, is is only, only useful in our anxiety, stimulant for the patient.” (HCP 3, GpwER)

Some clinicians reflected that they found it helpful that other chronic conditions had been defined (e.g., chronic pain, chronic fatigue), focussing on symptom management rather than treatment of the underlying condition.

“It’s a bit like chronic pain you know…and you can see it, you can measure it, in fact it’s perhaps easier to ascertain than chronic pain ‘cause, you can see it it’s there.” (Clinician 9, ACP)

Theme 3: Variations in clinical management of chronic breathlessness

Management of chronic breathlessness was reported as variable by patients and clinicians. This includes variation in techniques/tools for breathlessness management, and examples of good practice.

Variations in treatment and management

Management including pharmacological, non-pharmacological, and self-directed strategies were reported by patients and clinicians.

Patients mainly reported receiving pharmacological treatment for the underlying condition e.g., inhaled medication for COPD, or antibiotics/steroids for infective exacerbations; that is, only as indirect management of their breathlessness. Only clinicians discussed the potential use of opioids as a pharmacological intervention for breathlessness itself.

“No, only only me nebulator [nebuliser] but I I don’t use that often…but er…I always have me pump [inhaler], I’ve had one in every jacket pocket.” (Patient 13, Male, 76; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to underlying disease only])

“And in terms of maximal optimal treatment I suppose if they haven’t, er if that doesn’t include opiates erm I’d use that as well.” (Clinician 3, GPwER)

Clinicians reported use of non-pharmacological breathlessness management options, but these were less often mentioned by patients. These included breathing exercises, calming hand, fan, relaxation, rest, and referrals (e.g., physiotherapy, COPD/pulmonary rehabilitation, or breathlessness clinics). Most clinicians referred to the management of patients within the context of COPD.

“…there’s the non-pharmacological stuff basically to pulmonary rehab, breathing exercises, er CBT [cognitive behavioural therapy], you know using a fan on the face that sort er, getting people to pace themselves better erm, I suppose anxiety management’s a lot of it too…” (Clinician 1, GPwER; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

Some patients reported how they adapted their behaviour and developed their own self-management strategies which included resting, breathing exercises, mobility aids (electric scooters, walkers), exercise, thinking positively, or inhalers/nebulisers. One patient referred to breathing techniques taught by physiotherapists as being very useful. Religious beliefs and faith/spirituality were also described by some as a coping strategy.

“Well as I say I go out on my scooter I’m able to do my own shopping…when I first got the scooters the boys said ‘Oh Mam you’re giving up’. But I said ‘No on the contrary it’s what’s gonna keep me going’.” (Patient 4, Female, 70; Breathing Space – patients’ coping [engaged])

“You’ve gotta have, beliefs. I said it’s no good having my illnesses, and not believing that…I’ve got longer. I said I aren’t give up on life yet.” (Patient 18, Female, 81; Total Dyspnea – existential; Breathing Space - patients’ coping [engaged])

Carers were integral to management, providing medical/social support to help the patient with their breathlessness e.g., cooking, driving, shopping, attending/keeping records of appointments, and understanding the patients’ care needs.

Examples of good practice

There were examples of good practice from clinicians using a holistic patient-centred approach even though the limits of disease-directed treatment had been reached.

“…I don’t effectively do anything, it’s just that chat that gets him through. It’s quite frustrating ‘cause I can’t manage him with anything ‘cause he’s intolerant of everything. Er, and he’s been through the lot so the only support I can give him is just to, have a chat.” (Clinician 3, GPwER; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

A few clinicians used outcome measures to help assess breathlessness, and most used general observation e.g., when entering the treatment room. Regular follow-up appointments, practice-based group consultations where patients can learn from each other, providing education/information about symptom, condition, and medications to patients/carers, and practitioner peer support were also reported.

“Erm, I’ve recently set up like group consultations erm, here for COPD. Erm, because I think again, these are a group that, benefit hugely by others, erm and support because quite often, isolation and depression is part of, COPD, because they can’t get out maybe as much or, they’re erm breathless and they don’t want to, you know erm, exert their selves.” (Clinician 8, Respiratory Practice Nurse; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

Clinician: “I think [patient] education is just massive. It’s education all the time.” (Clinician 10, Practice Nurse)

Theme 4: The need for education and information about chronic breathlessness

This theme described the differences in knowledge, management, and expectations of care regarding chronic breathlessness, from the patient, carer, and clinician perspective.

Clinicians’ knowledge and expectations of care regarding chronic breathlessness

In general, clinicians appeared to have a good knowledge, awareness, and understanding of breathlessness and its impact on both patient and carers.

“Yeah I think I’ve understood a little bit more about, about the symptom rather than the pathology behind it.” (Clinician 1, GPwER, after attending a palliative care course about breathlessness; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to breathlessness and underlying disease])

However, even when they demonstrated good knowledge or confidence about the symptom and its causal diseases, clinicians still reported feeling ‘helpless’ to manage breathlessness.

“…understanding as a symptom and, is different to our understanding of the pathology behind it. Erm I think, as doctors we’re all, quite smug about understanding the pathology but, but that doesn’t always mean we can treat the symptom, and we’re often quite useless at treating the symptom, even though we understand what’s going on (laughs).” (Clinician 1, GPwER; Breathing Space - clinicians’ responsiveness to breathlessness [responsiveness to underlying disease only])

Patient’s knowledge and expectations of care regarding chronic breathlessness

Patients and carers demonstrated poor knowledge of, and had low expectations about, breathlessness-directed treatments.

Carer: “Well yeah you take you’re taking your inhalers.”

Patient: “That’s all. Yes.”

Carer: “Well that’s all there is isn’t it.” (Patient 15, Male, 78 and Carer 4, Wife of Patient 15; Breathing Space – patients’ coping [disengaged])

If considered specifically, breathlessness was under-reported, normalised, and attributed to growing older.

“I never spoke about it when I first had it. I never bothered. I just thought it was old age.” (Patient 8, Male, 92)

Patients lack of consideration of breathlessness as something to report to their clinician was compounded by the perceived lack of time, and disease-focused nature of primary care contacts. This was not conducive to being educated about breathlessness and its management although the importance of education was recognised by one patient.