Invisibility of breathlessness in clinical consultations: a cross-sectional, national online survey

To the Editor:

Breathlessness diminishes the physical, mental and social wellbeing of people living long-term with this disabling symptom [1]. Identifying its impacts on patients and their families helps to inform appropriate non-pharmacological and pharmacological management [2, 3]. A randomised controlled trial suggests that clinicians are less likely to identify or manage chronic breathlessness than chronic pain [4]. Previous population studies estimate 9.5% of adults experience breathlessness [5], with one in 100 individuals being seriously impacted daily [6]. We conducted a population study aimed at identifying the proportion of people with breathlessness who report this symptom in clinical consultations. If discussed, we explored whether patients or clinicians (physicians; nurses) initiated the conversation and, if not discussed, whether patients would welcome such discussions.

An Australian cross-sectional, online survey using the Qualtrics platform (Utah, USA) was undertaken (from 12 July to 2 August, 2021) to recruit adults (≥18 years) representative of the Australian 2016 census population by age, sex, state/territory of residence and rurality [7]. Participants were invited by Qualtrics through its database of >800 000 registered panel members. Recruitment quotas were set for combinations of all four demographic parameters.

The survey was piloted with members of the Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT) Consumer Advisory Group (University of Technology Sydney) and 110 Qualtrics panellists before general recruitment. Panel members provided initial informed consent when joining Qualtrics’ panel. A participant information sheet was provided before obtaining additional informed consent for this survey. Approval was obtained from the human research ethics committee (University of Technology Sydney; UTS HREC ETH20-5114).

Participants’ self-reported data included: age, sex, state/territory of residence, postcode (to code rurality using the Australian Statistical Geography Standards [8]), height/weight (to estimate body mass index (BMI)), and smoking status. The presence and severity of breathlessness was assessed using the modified Medical Research Council (mMRC) breathlessness scale (0–4) [9]. Higher scores indicate decreasing physical exertion before breathlessness supervenes. Analyses compared mMRC 2 with mMRC 3–4. The duration (years/months) and perceived primary cause (multiple choice from a range of health conditions) of breathlessness were sought. Respondents with breathlessness were asked whether this had ever been discussed in clinical consultations; if so, who initiated the discussion (patient or clinician); and, if not, whether they would welcome such a discussion (figure 1).

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FIGURE 1

Survey questions and main findings. ^#: no significant difference by intensity of breathlessness.

Demographics were described. Differences between those who did and did not initiate conversations (for both patients and clinicians), including preferences, were assessed using chi-square tests, t-tests or Mann–Whitney tests as appropriate. Binary and multinominal logistic regression assessed the predictors for preferences regarding breathlessness discussions. No data were imputed. Analyses used Excel (Microsoft Office 16) and Statistical Package for the Social Sciences (SPSS) software, V28.0 (IBM Corporation, Armonk, NY; 2016). A p-value of <0.05 was considered statistically significant.

Of 10 033 survey respondents, 1106 (11.0%) reported mMRC ≥2 for whom: mean age was 43.4 years; 53.4% (n=588) were female; most lived in metropolitan areas (74.7%; n=825); 60.7% (n=671) had a history of smoking; and 49.0% (n=423) attributed their breathlessness to a lung condition. Median breathlessness duration was 3.5 years. BMI was available for 80% of respondents, of whom 60.2% (n=492) reported being overweight/obese/very obese.

Of those with breathlessness, 69.1% (764/1106) indicated that they initiated discussions about their breathlessness (figure 1). For 85.1% (291/342) of those who did not raise the issue themselves, clinicians did not raise the topic of breathlessness either (hereon “invisible breathlessness”). Of those with invisible breathlessness, 53.6% (156/291) indicated they would have welcomed a conversation about it. Breathlessness remained completely unexplored for 24% (72/300) of people with severe breathlessness (mMRC 3–4), of whom 45.8% (33/72) would have welcomed such discussions.

There was no significant association between breathlessness intensity and initiating conversations about breathlessness nor preferences for having such discussions (figure 1). Older males were more likely to initiate a conversation, yet less likely to be asked about their breathlessness by clinicians. Breathlessness duration and a history of smoking were predictors for patient- but not clinician-initiated conversations. Clinicians were less likely to discuss breathlessness with patients who are overweight, yet those patients were more likely to welcome such a discussion. In bivariate analyses, age was the only factor in driving preferences for having discussions, and remained as such in multivariate regression when sex, smoking and level of breathlessness were included.

The survey found that 26.3% of people with mMRC ≥2 lived with unreported breathlessness, which is similar to a UK population online survey where 29% of people with mMRC ≥2 had not sought medical advice for their breathlessness [10].

The key findings are three-fold. Firstly, this study found that breathlessness is often invisible in routine clinical consultations because many patients and clinicians fail to raise the topic. Specifically, half of people with breathlessness and a quarter of people with severe breathlessness (i.e. housebound or unable to self-care due to breathlessness) live with the symptom and its associated impact undetected, generating unmet needs.

Secondly, clinicians rarely initiated conversations about breathlessness unless prompted by patients. Although empowering patients to raise the topic with their treating clinician and advocate for their needs is important, identifying breathlessness is a skill in clinicians’ history taking and should be implemented routinely. Providing clinicians with a more optimal screening question to identify the presence, severity and impact of breathlessness may be the critical first step in initiating a conversation about patients’ unmet needs. Such systematic inquiry would facilitate better symptom management, aligned with people's priorities.

Thirdly, breathlessness intensity did not drive these conversations. As people progressively reduce or cease their everyday activities to self-manage their worsening breathlessness, there is a risk that this modified lifestyle becomes their “new normal”, whilst affecting the very basic aspects of their personhood. As effects can be experienced for years with progressive deconditioning, clinicians must actively elicit the impact of breathlessness across the symptom's trajectory to help prevent this vicious cycle.

This study shows that breathlessness remains surprisingly invisible within the health system because patients and clinicians alike are reluctant to raise the topic during clinical encounters. Patients may have normalised their breathlessness [11], adjusted their lives to minimise/avoid it [12] or feel stigmatised [13]. Clinicians may underestimate its impact [14] or feel constrained in how to constructively address it [15]. Future research should explore the barriers to communication to better understand the reasons that drive hesitancy and avoidance in discussing this debilitating symptom in routine practice. Incorporating effective symptom screening, together with education and resources for implementing evidence-based therapies, would enable better long-term symptom management.

This study included a large, nationally representative community sample (standardised to the national census), with reported rates of breathlessness similar to other general adult population prevalence estimates [6]. Although the online delivery may have limited the survey's uptake to those with internet capabilities or digital literacy, it may have positively influenced participation of people with severely limited physical function. It also facilitated recruitment independently of health service contact, thus potentially capturing people who are otherwise invisible to it.

Clinicians must actively explore long-term breathlessness because one in two patients with this do not talk about it during routine clinical encounters. Addressing long-term breathlessness proactively, systematically and empathetically is a human right that patients should expect to be addressed by competent, caring clinicians [16, 17]. As clinicians rarely initiate breathlessness conversations unless prompted by patients, clinical history taking should be refined with a more effective symptom screening question designed specifically to identify the presence, severity and impact of breathlessness.

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