"Breathlessness stops me doing everything": exploring the impact of chronic breathlessness due to advanced respiratory disease and exacerbating factors - a qualitative study.

Introduction
Breathlessness affects over 75 million people worldwide [1], including most with severe lung disease, incurable cancer, or heart failure [2, 3]. Additionally, more than two-thirds of those living with breathlessness have multiple health conditions [4]. Breathlessness is a transdiagnostic problem, exacerbated by social, environmental, and economic factors [5, 6]. In the UK, one in 10 people, and nearly a third of those over 70 years, experience breathlessness [7]. As populations age and long-term conditions increase, its impact is set to grow.
Breathlessness is the most common symptom across respiratory conditions. It is more prevalent than cough in advanced respiratory diseases and is typically more severe [8, 9]. As the disease progresses, breathlessness worsens, serving as a key indicator of disease burden and deterioration [10, 11]. It is also linked to reduced life expectancy [12, 13]. Patients with breathlessness are more likely to seek urgent care, have higher hospital admission rates, driving substantial NHS and social care costs [14, 15].
In 2017, the cost of formal care for chronic breathlessness was estimated at £3,253 over three months, with hospitalisation accounting for 60% of the costs [16]. Costs rose with increasing disability [16]. Despite its impact, breathlessness remains underdiagnosed and undertreated [6, 17]. Early intervention may slow or prevent increasing disability, improving patient outcomes and reduce societal cost [6].
Treating respiratory diseases in isolation may no longer be the preferred approach [6]. Instead, prioritising breathlessness both as a symptom across multiple respiratory conditions and as a major contributor to respiratory morbidity and mortality could lead to improved patient and health system outcomes [18, 19]. Such a shift in focus will enable the co-development of new treatments and interventions with patients, specifically targeting breathlessness. In turn, this could facilitate earlier access to breathlessness interventions, better breathlessness management (clinical and self-management), and reduce emergency department and hospital admissions due to breathlessness, ultimately benefiting both individuals and healthcare services [6].
To achieve this, we must work in partnership with patients to fully understand their lived experience of breathlessness [6]. Identifying factors that exacerbate breathlessness will support the co-development of new treatments. This approach is strongly advocated by patients, caregivers, and healthcare professionals, as demonstrated in the first ever James Lind Alliance symptom-focused (breathlessness) research priority-setting exercise [6].
To date, the majority of qualitive research has concentrated on the lived experience of being diagnosed with and/or living with a disease specific respiratory condition such as COPD, interstitial lung disease (ILD) and lung cancer [20–24]. In contrast, the specific impact of chronic breathlessness on individuals living with advanced respiratory disease has received comparatively limited attention. Notably, Gysels and Higginson [25] conducted a comparative analysis of the lived experience of breathlessness across COPD, heart failure, cancer and motor neurone disease (MND), where they identified common themes of loss, fear and adaption [25]. Their work has provided valuable and novel insights into breathlessness perception and coping across these conditions but did not sufficiently address broader social and environmental determinants that influence breathlessness [25]. This study builds on the foundational work by Gysels and Higginson [25] by adopting a transdiagnostic approach, incorporating participants living with chronic breathlessness due to advanced respiratory disease, not only to explore the personal and psychological impact of chronic breathlessness, but also to examine the external factors that exacerbate and shape the experience of breathlessness.
The aim of this study was to explore the lived experiences of individuals living with chronic breathlessness due to advanced respiratory disease, focusing on its impact on their lives and the factors that exacerbate their breathlessness.

Methods

Study design
This research is grounded in a pragmatist research paradigm. Pragmatism is focused on addressing practical problems in real-world settings. It acknowledges that knowledge is understood through human experience and gains significance when paired with action. Pragmatism promotes experimentation and reflection, making it well suited to the development of interventions. This study is a secondary data analysis of qualitative interviews that we previously published in ERJ Open Research [26, 27]. This supplementary secondary analysis [28] of data collected for the SELF-BREATHE study [13], falls within the aims and objectives of the original study, but provides a more in-depth analysis of one emergent feature of the data only partially reported in the primary study (namely the lived experience of individuals living with chronic breathlessness due to advanced respiratory disease). The findings are reported in accordance with the COREQ guidance (Consolidated Framework for Reporting Qualitative Research) [14] (see online supplementary materials for participant inclusion/exclusion criteria and recruitment process).

Ethical approval
Ethical and local research and development approval was obtained prior to commencing this research (REC reference number 20/LO/0160). The study was registered on www.clinicaltrials.gov (NCT 04466020).

Sample size
Recruitment continued until pragmatic saturation was indicated (i.e. sufficient information was gained to address the study aim). This was determined by preliminary analysis of detailed reflective notes taken immediately after interviews, and constant comparison of new data with existing findings [29]. We anticipated this would occur after recruitment of approximately 20–25 participants.

Interview conduct
Semi-structured qualitative interviews were conducted by two researchers (CR or AR), with experience in conducting qualitative interviews. As this study was conducted during the COVID-19 pandemic and resultant lockdowns in the UK, interviews were conducted over the telephone with patients at their place of residence. Interviews were scheduled to last approximately 60 min and participants were not known to the interviewer prior to the interview. They were asked to disclose whether anyone else was present in the room during the interview, although the presence of another person would not preclude their participation.
Patient characteristics (age, ethnicity, Medical Research Council (MRC) dyspnoea score and living situation) were obtained through direct questioning before conducting the semi-structured interviews. These characteristics are summarised in table 1. The interviews followed a semi-structured topic guide, which explored individuals’ lived experiences of breathlessness, the impact of breathlessness on their daily lives and the factors that participants believed worsened their breathlessness.

Analysis
The interview audio recordings were transcribed verbatim, ensuring the use of pseudonyms and the anonymisation of any patient or staff-identifiable references. A reflexive diary was maintained to document reflections on the flow of the interview, contextual factors, participant responses and personal insights.
A conventional content analysis was conducted, supported by Microsoft Word and Excel software [30]. The analysis followed an inductive approach, beginning with immersion in the data. Each transcript was read line by line, with codes derived to capture key thoughts and concepts. These codes were then refined and organised into categories or meaningful clusters. Coding, as part of this secondary data analysis was conducted by the primary researcher (CR), who has experience in conducting and analysing qualitative research, and was reviewed by the qualitative lead for the project (KB).
The analysis was guided by an underpinning pragmatist epistemology, focusing on understanding the lived experience of breathlessness and identifying key factors that exacerbate it. Gaining insight into these potentially modifiable factors will help inform the development of interventions to support individuals living with chronic breathlessness.

Results

Participants
Between 1 July and 1 November 2020, 25 patients with chronic breathlessness due to advanced disease were interviewed: 17 males and eight females. 13 were living with COPD, eight with lung cancer, three with ILD and one with bronchiectasis. The median age was 70 years (range 47–86), the MRC dyspnoea score was 3 (range 2−5) and 14 of 25 were living alone.

Findings
Four key themes were identified from the qualitative interviews (figure 1). Importantly, these themes were consistent across diagnostic groups, highlighting shared experiences of chronic breathlessness irrespective of underlying disease.
The impact of breathlessness on daily activities, leading to increased dependence on others.

The effect of breathlessness on social interactions and personal relationships, resulting in isolation.

The Impact of living with multiple long-term conditions and environmental factors that worsen breathlessness.

Cognitive, affective and behavioural responses to breathlessness.

The impact of breathlessness on daily activities, leading to increased dependence on others
Participants discussed the direct physical impact of breathlessness on their daily activities. The impacts were wide reaching affecting their ability to complete all activities of daily living such as walking, housework and washing and dressing themselves (table 2 quotes 1–3 (T2 Q1–3)). For many, this led to a greater dependence on others for physical assistance and support, and a shift in the roles and nature of their relationships. Specifically, many participants talked about an increased reliance on others for tasks such as personal care (T2 Q4).

The effect of breathlessness on social interactions and personal relationships, resulting in isolation
Participants also described the negative impact of breathlessness on their interactions with others. They described how all their important relationships were impacted in some way by their breathlessness. At a most basic level breathlessness led to an inability to communicate effectively with others due to the breathlessness limiting their ability to speak. This impact was felt across all interactions (T2 Q5, Q6). However, breathless also impacted on their ability to participate socially, and engage in the social activities that they had previously enjoyed such as dancing or attending sporting events (T2 Q7, Q8).
Participants also described how the breathlessness impacted on their ability to build connections with those that matter to them. For example, one participant described how their breathlessness resulted in an inability to bond with their grandchildren through physical play, resulting in a reduction in their ability to build a connection with them (T2 Q9). Intimate relationships were also impacted, leading to a change in the nature of that relationship. For some their breathlessness prevented them from experiencing sexual intimacy, leading to a negative impact on this aspect of their lives (T2 Q10).

The impact of living with multiple long-term conditions and environmental factors that worsen breathlessness
Participants spoke of the complexity of breathlessness, recognising it as a symptom that does not occur in isolation. They discussed the impact of living with multiple long-term conditions and environmental factors that worsen breathlessness.
They acknowledged that their breathlessness was not solely attributed to their respiratory disease and reflected on the challenges of living with multiple long-term conditions, such as arthritis, chronic pain and obesity, all of which exacerbated their breathlessness (T2 Q11, Q12). Participants described how they could directly attribute changes or worsening of their chronic breathlessness to weight gain, a factor further exacerbated during the COVID-19 pandemic (T2 Q13, Q14). Additionally, breathlessness can be exacerbated as a consequence of treatment for a specific condition. One participant shared their experience of worsening breathlessness as a result of their treatment for lung cancer (T2 Q15).
Participants discussed various indoor environmental factors that contributed to their breathlessness, particularly during the winter months. They emphasised substandard housing conditions, such as dampness and mould, which were especially common in colder weather, significantly worsening their breathlessness (T2 Q16). Participants also shared insights into how external environmental factors such as extreme temperatures and high pollen levels, contributed to worsening of their breathlessness (T2 Q17–20).

Cognitive, affective and behavioural responses to breathlessness
Cognitive, affective and behavioural responses refer to the three interrelated domains through which individuals perceive (cognitive response), emotionally react (affective response) and respond to (behavioural response) health-related stimuli, symptoms and situations [31]. Participants described how their cognitive and affective responses played a crucial role in shaping their perceptions of breathlessness and quality of life.
Participants highlighted a sense of losing control (cognitive response), due to the unpredictable nature of breathlessness leading to anxiety and panic (affective response). However, the reverse was also experienced with anxiety unrelated to breathlessness triggering breathlessness through the “fight or flight” response, increased heart rate and hyperventilation, which exacerbate or worsen breathlessness. Participants highlighted how panic triggered breathlessness attacks led them to seek out of hours emergency services support, perpetuating the negativity associated with their breathlessness (T2 Q21–23).
Also highlighted was the stigma associated with smoking related disease coupled with the feeling of not being able to breathe properly (cognitive response). Together these triggered a cycle of breathlessness that worsens mental health and vice versa, which can result in the development of, or worsening of depression (affective response) (T2 Q24).
Participants described how negative cognitive and affective responses, particularly fear and embarrassment, resulted in avoidance behaviours in response to breathlessness. This, in turn resulted in social isolation and avoidance of exercise. They explained that fear often triggered avoidance, which reinforced harmful health beliefs and fuelled a cycle of decreasing physical activity and social withdrawal T2 Q25–28).
For others, embarrassment was the primary trigger for avoidance behaviours, becoming a significant factor in their social isolation. This response arose from a fear of being judged or feeling self-consciousness about their breathlessness in social settings. Breathlessness can be uncomfortable and distressing, and some individuals worried about others noticing or perceiving them as weak or incapable, due to their breathlessness. As a result, some choose to avoid social situations altogether to prevent feeling embarrassed or stigmatised (T2 Q29).

Discussion

Key findings
Our findings highlight the profoundly debilitating consequence of chronic breathlessness. These experiences were evident across all the diagnostic groups, highlighting the shared nature of chronic breathlessness irrespective of the underlying respiratory diagnosis. This demonstrates the importance of recognising breathlessness as a distinct clinical and experiential entity [32, 33]. Furthermore, our data support the case for a symptom-focused, rather than disease-specific approach to the management of chronic breathlessness [32, 33].
Our findings advance a transdiagnostic and holistic understanding of chronic breathlessness, in advanced respiratory disease. In contrast to earlier research that predominately examined symptom perception and coping within specific diagnostic groups, this study explored the lived experience of breathlessness across malignant and nonmalignant conditions, and within the broader context of the COVID-19 pandemic, increasing prevalence of multiple long-term conditions and a globally ageing population [34].
This study highlights the role of modifiable social and environmental factors in exacerbating chronic breathlessness. The findings provide evidence related to social determinants by providing experiential data to explain how social determinants contribute to amplifying multimorbidity and the worsening of health outcomes [35]. In the context of daily life living with chronic breathlessness, our findings describe cognitive, affective and behavioural responses to chronic breathlessness, that contribute to a cycle of breathlessness triggered functional decline.

Significance of the findings
Chronic breathlessness in advanced respiratory disease has far reaching consequences, affecting every aspect of daily life. Participants described how breathlessness significantly disrupted their ability to carry out activities of daily living, where getting washed and dressed, and managing the house became increasingly challenging. This loss of independence, resulted in an increasing reliance on others for help and support, which in turn evoked feelings of guilt and burden which altered the dynamics of personal relationships. Our data demonstrate that relationships were challenged by breathlessness. At the most basic level, talking was hard while breathless, which meant often individuals could not communicate what they wanted to, or how they wanted to. The breathlessness also stifled their social activities, putting previously enjoyed activities beyond their reach, and shrinking their world as a result. The physical limitations imposed by breathlessness also changed important relationships, further contributing to a sense of loss and disconnection. Our results indicate that all relationships were affected by participant's reduced physical capabilities because of their breathlessness, which shifted the roles and responsibilities within these relationships. Importantly, participants’ lived experiences reiterate that breathlessness does not occur in isolation. Participants spoke of multiple long-term conditions, such as arthritis, chronic pain and obesity, all of which exacerbated their breathlessness. Participants also spoke of environmental factors which compounded the breathlessness uncertainty they experienced day to day. Participants described how negative thoughts and emotional discomfort such as fear, embarrassment and anxiety, resulted in avoidance of activities that made them breathlessness. While this may provide them with temporary relief, it reinforces negative health beliefs and behaviours that worsen breathlessness that in the long-term compounds their isolation.
This study is a supplementary secondary analysis of qualitive interviews, which examines in more depth an emergent aspect of the data that was not within the scope of the primary analysis [28]. The first paper from this work explored internet use and the willingness of individuals living with chronic breathlessness to engage with an online digital intervention (SELF-BREATHE) [26], while the second examined patient preferences and choices regarding the content of SELF-BREATHE [27]. The richness of the data, particularly concerning the lived experiences of chronic breathlessness, prompted this secondary analysis. The analysis was undertaken to gain a deeper understanding of the lived experiences of chronic breathlessness and the factors that exacerbate it, to inform the development of future supportive interventions and services. The emergent themes: the impact of living with multiple long-term conditions and environmental factors that exacerbate breathlessness, and cognitive, affective and behavioural responses to breathlessness, provide new insights into the lived experience of breathlessness. These findings provide real-world context to the quantitative evidence, highlighting the significance of social and environmental determinants of health [35–37], as well as the cognitive and behavioural responses associated with chronic breathlessness [38].
These interviews were conducted during the COVID-19 pandemic, a time characterised by heightened health-related anxieties, social restrictions and significant strain on health and social care services. Although these interviews were conducted during this period, the impact of COVID-19 on participants lived experiences of breathlessness was not explicitly explored. One participant did refer to the pandemic in the context of weight gain, which they perceived to have exacerbated their breathlessness. Our primary publication [26] from these interviews highlighted increases in internet use during the pandemic. However, COVID-19 itself did not emerge as a prominent theme in the interviews, most likely due to the absence of direct questioning on this topic.
Considerable progress has been made over the years in assessing psychological influences on breathlessness such as anxiety and depression. Access to psychological therapies remains a challenge, and these data highlight the need to address common negative behavioural responses to breathlessness such as fear and embarrassment avoidance that perpetuate a downward spiral of increasing breathlessness and disability [5, 38].
There is good evidence to support breathlessness supportive services which improve patients’ breathlessness, quality of life [39, 40, 51] and data suggest that such services are cost-effective [41]. Despite the evidence [39], and European Respiratory Society clinical practice guidelines [42], implementation of such services remains low. To address this, SELF-BREATHE a patient-informed, transdiagnostic digital intervention was developed, underpinned by Leventhal's self-regulation model [5]. It promotes breathlessness self-management through education, breathing exercises, pacing, and goal setting [5]. A feasibility randomised controlled trial (RCT) showed it is acceptable and deliverable [5]. A multicentre RCT is underway.
Our data highlight the negative impact breathlessness has on personal relationship such as the loss of sexual intimacy. Personal relationships often change due to breathlessness progression, leading to an increased dependence on others, particularly partners and family members for assistance with personal care. This finding from our qualitative interviews, resonate with recent study by Kochovska
et al. [43], which highlights that caring (informal/unpaid) for someone with chronic breathlessness can be rewarding, conversely, it too can be burdensome and/or unwelcome. Many have taken on this role without any discussion or thoughts about their personal ability to undertake it, or the long-term impact of this caregiving role even after death [43]. A recent systematic review by Blütgen
et al. [44], highlighted the substantial burden, unmet needs and lack of support for informal (unpaid) carers of people living with chronic breathlessness. Future research needs to focus on how best to address the unmet needs of the growing number of informal caregivers caring for people living with chronic breathlessness, and support individuals and their informal carers to maintain their relationships in presence of increasing symptom burden and disability.
Our findings highlight the significant impact of environmental factors on breathlessness. Air pollution contributes to around 5% of all global deaths and an estimated 40 000 premature deaths each year in the UK [45], while also increasing respiratory morbidity and hospital admissions. Vulnerable groups, particularly those living in living in high-traffic areas with limited access to green spaces [46, 47] are disproportionally affected. Addressing this requires integrated policy action across public health, urban planning and environmental sectors, prioritising the most affected communities [45–47]. Reducing air pollution would not only improve health outcomes but also alleviate the economic burden on healthcare systems [45, 46, 48].
Our data stresses the importance of addressing substandard living conditions such as damp, mould and poor ventilation, which further exacerbate indoor air pollution, leading to increased respiratory issues, especially in socially deprived communities [36, 37, 49]. The complex interplay between housing disrepair, overcrowding and poor ventilation exacerbates indoor air pollution, leading to increased respiratory issues, including breathlessness [36, 37, 49]. The James Lind Alliance has identified improving indoor and outdoor environments as a key research priority in breathlessness care [50].

Conclusion
Breathlessness significantly disrupts daily life, limiting independence and social engagement. Negative cognitive, affective responses to breathlessness such as fear, embarrassment and anxiety, lead to activity avoidance. While this may offer short term relief, it reinforces harmful beliefs and behaviours worsening breathlessness over time and limiting engagement in meaningful activities. The multifaceted nature of breathlessness highlights the need for a holistic, multi-agency response. Raising awareness of contributing factors (such as poor housing and pollution), which lie beyond healthcare, requires a joined-up, public health approach. Collaboration with external bodies, including housing and environmental agencies, is vital to address these modifiable risks and ease pressure on individuals and services.