Prevalence, severity and impacts of breathlessness in Indian adults: An exploratory, nationally representative, cross-sectional online survey.

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation's Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities.

"You're the only thing he comes out [of his room] for": A qualitative study of engagement between Laughter Care Specialists and families of people with dementia in long-term care.

OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.

BACKGROUND: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. PROPOSAL: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis. DISCUSSION: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.

Assessment and Management of Sleep Disturbance in Palliative Care Settings.

Background: Sleep disturbances, including insomnia, sleep-disordered breathing, and circadian rhythm disorders with potential consequences including excessive daytime somnolence and worsening fatigue, are prevalent yet largely under-measured and therefore under-managed problems in people receiving palliative care. This has the potential to negatively affect the person's functioning and quality of life. Objectives: We aimed to review the current practice of assessment and management of sleep disturbances in people with life-limiting illnesses in Australian and New Zealand palliative care settings, and to define areas for improvement in assessment and management of sleep disturbances and further research. Design: A cross-sectional, online survey was conducted with palliative care health professionals (PCHPs) to explore current approaches to routine assessment of sleep disturbances and PCHPs' awareness of, and perceived access to, evidence-based resources for assessing and managing sleep disturbances in their local settings. Results: Fifty-four PCHPs responded to the survey, including allied health professionals (44%), palliative care nurses (26%), and physicians (19%). Over 70% of PCHPs endorsed routine verbal screening of sleep symptoms, and >90% recommended management with basic behavioral strategies. However, none of PCHPs used validated patient-reported outcome measures for sleep, and <10% of PCHPs demonstrated awareness or use of sleep-specific interventions (including medications). Only 40% reported they had access to sleep specialist services for patients. Conclusion: Our findings provide a useful snapshot of current approaches to managing sleep disturbances in palliative care. Gaps in current practice are highlighted, including the lack of structured, clinical assessment, referral pathways, and PCHPs' perceived lack of access to targeted interventions for sleep disturbances.

Australian population norms for health-related quality of life measured using the EQ-5D-5L, and relationships with sociodemographic characteristics.

BACKGROUND: Measuring health related quality-of-life (HRQoL) of the general population is essential to establish a reference for health outcome evaluations. This study sought to establish EQ-5D-5L population norms in Australia and to investigate the heterogeneity of HRQoL between sociodemographic variables. METHODS: A cross-sectional study comprising of a representative sample of Australia's general population (n = 9958) aged 18 or older. Recruitment quotas were set for the Australian census population by age, sex, state/territory of residence and rurality. Participants were recruited by Qualtrics through its database of over 800,000 registered panel members and asked to value their own state of health using the EQ-5D-5L domains and the EuroQol-Visual Analogue Scale (EQ-VAS). An Australian value set developed using Discreet Choice Experiment was used to calculate utility scores. RESULTS: The estimated mean EQ-5D-5L index for Australia's general population was 0.86 (standard deviation [SD] 0.19), and the EQ-VAS score was estimated as 73.2 (SD 21.7). 23.9% of the study population reported being in the best health state (11,111). Younger people, current smokers, people who are unemployed and people with more financial stress reported a lower EQ-5D-5L index score (p < 0.001). Residents in the major cities, inner regional and outer regional Australia reported higher health utility scores than those residing in remote and very remote Australia. CONCLUSIONS: This is the first Australian study to apply the EQ-5D-5L in a nationally representative sample. The EQ-5D-5L Australian population norms obtained can be used as reference scores for future population health evaluations and comparisons. The findings facilitate a national reference for clinical, economic, and policy decision-making processes and provide a fuller understanding of the Australian population's HRQoL.

Participant Safety in Multisite, Randomized, Double-Blind, Placebo-Controlled Clinical Trials in Hospice/Palliative Care: Data from the Contracted Studies of the Australian National Palliative Care Clinical Studies Collaborative.

Objective: To describe the harms in all arms of six consecutive multi-site, double-blind, placebo-controlled randomised clinical trials. Background: Controversies surround conduct of phase III clinical trials in palliative care. Concerns include risks to participants' safety, use of placebo arms, participants' burden, and justification when therapies are already widely used. Methods: This study collates safety data of the first six studies of the Australian national Palliative Care Clinical Studies Collaborative. On an intention-to-treat basis, all harms are described using standard international definitions, their severity, outcomes, and level of attribution. Results: Studies recruited 1,232 participants: 65/1,232 (5.3%) participants had serious adverse events of which none had a definite (blinded) attribution, all of which settled with ceasing the intervention; 49/1,232 (4.0%) participants had adverse events. No participants on placebo arms had adverse or serious adverse events with definite (blinded) attribution. Discussion: These studies are safe for participants and generate knowledge to support informed patient decision making.

The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial.

BACKGROUND: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers' perceived burden. AIM: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. DESIGN: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. SETTING/PARTICIPANTS: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. RESULTS: Caregivers (n = 49; 59% women; median age 68 years [IQR 50-75]) reported median baseline caregiver burden 12 [IQR 5-17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients' minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). CONCLUSIONS: Caregivers reported high levels of caregiver burden, but patients' response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period.

Which breathlessness dimensions associate most strongly with fatigue?-The population-based VASCOL study of elderly men.

BACKGROUND: Breathlessness and fatigue are common symptoms in older people. We aimed to evaluate how different breathlessness dimensions (overall intensity, unpleasantness, sensory descriptors, emotional responses) were associated with fatigue in elderly men. METHODS: This was a cross-sectional analysis of the population-based VAScular disease and Chronic Obstructive Lung Disease (VASCOL) study of 73-year old men. Breathlessness dimensions were assessed using the Dyspnoea-12 (D-12), Multidimensional Dyspnoea Profile (MDP), and the modified Medical Research Council (mMRC) scale. Fatigue was assessed using the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) questionnaire. Clinically relevant fatigue was defined as FACIT-F≤ 30 units. Scores were compared standardized as z-scores and analysed using linear regression, adjusted for body mass index, smoking, depression, cancer, sleep apnoea, prior cardiac surgery, respiratory and cardiovascular disease. RESULTS: Of 677 participants, 11.7% had clinically relevant fatigue. Higher breathlessness scores were associated with having worse fatigue; for D-12 total, -0.35 ([95% CI] -0.41 to -0.30) and for MDP A1, -0.24 (-0.30 to -0.18). Associations were similar across all the evaluated breathlessness dimensions even when adjusting for the potential confounders. CONCLUSION: Breathlessness assessed using D-12 and MDP was associated with worse fatigue in elderly men, similarly across different breathlessness dimensions.

Exploring the Experience of Breathlessness with the Common-Sense Model of Self-Regulation (CSM).

Chronic breathlessness is a multidimensional, unpleasant symptom common to many health conditions. The Common-Sense Model of Self-Regulation (CSM) was developed to help understand how individuals make sense of their illness. This model has been underused in the study of breathlessness, especially in considering how information sources are integrated within an individual's cognitive and emotional representations of breathlessness. This descriptive qualitative study explored breathlessness beliefs, expectations, and language preferences of people experiencing chronic breathlessness using the CSM. Twenty-one community-dwelling individuals living with varying levels of breathlessness-related impairment were purposively recruited. Semi-structured interviews were conducted with questions reflecting components of the CSM. Interview transcripts were synthesized using deductive and inductive content analysis. Nineteen analytical categories emerged describing a range of cognitive and emotional breathlessness representations. Representations were developed through participants' personal experience and information from external sources including health professionals and the internet. Specific words and phrases about breathlessness with helpful or nonhelpful connotations were identified as contributors to breathlessness representations. The CSM aligns with current multidimensional models of breathlessness and provides health professionals with a robust theoretical framework for exploring breathlessness beliefs and expectations.

Phase II, double blind, placebo controlled, multi-site study to evaluate the safety, feasibility and desirability of conducting a phase III study of anamorelin for anorexia in people with small cell lung cancer: A study protocol (LUANA trial).

Anorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13-24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC); newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. Trial registration. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]. https://clin.larvol.com/trial-detail/ACTRN12622000129785.

Associations in Perceived Health and Persistent Breathlessness: A Cross-Sectional Study.

Background: Persistent breathlessness is debilitating and increases in prevalence with advanced age and at end of life. This study aimed to evaluate any relationship between self-reported global impressions of change (GIC) in perceived health and breathlessness in older men. Design: Cross-sectional study of 73-year-old Swedish men in the VAScular and Chronic Obstructive Lung disease study. A postal survey included items on perceived changes in health and breathlessness (GIC scales) and breathlessness (assessed using the modified Medical Research Council [mMRC] breathlessness scale, Dyspnea-12 and Multidimensional Dyspnea Scale) since age 65. Results: Of 801 respondents, breathlessness (mMRC ≥2) was reported by 17.9%, worsening breathlessness by 29.1%, and worsening perceived health by 51.3%. Worsening breathlessness was strongly correlated with worsening perceived health (Pearson's correlation coefficient of 0.68 [p < 0.001] and Kendall's τ of 0.56 [p < 0.001]) and associated with more limited function (47.2% vs. 29.7%; p < 0.0001) and increased rates of anxiety/depression. Conclusion: The strong correlation between perceived changes in health and persistent breathlessness helps delineate a more comprehensive picture of the challenges faced by older adults living with this disabling symptom.

Understanding persistent breathlessness: impact on patients and optimal approaches to symptomatic reduction - an overview.

INTRODUCTION: Persistent breathlessness (breathlessness persisting despite optimal treatment for the underlying condition and resulting in disability) is a prevalent syndrome associated with chronic and life-limiting conditions. Improving the clinical recognition and assessment of persistent breathlessness is essential to ensure people are provided with the best treatment for optimal symptom control. AREAS COVERED: This overview focuses on the impact of persistent breathlessness on patients, carers and the health system. It highlights the importance of identifying persistent breathlessness in clinical consultations, suggests steps to recognize this syndrome and discusses the evidence for non-pharmacological and pharmacological treatments in this context. Future research directions are also suggested. EXPERT OPINION: Persistent breathlessness is often invisible because 1) people may not engage with the health system and 2) both clinicians and patients are reluctant to discuss breathlessness in clinical consultations. Improving the recognition and assessment of this syndrome is critical to facilitate meaningful conversations between patients and clinicians and ensure patient-centered care. Non-pharmacological strategies are key to improving symptom management and health outcomes. Regular, low-dose, sustained-release morphine may help further reduce breathlessness in people who remain symptomatic despite disease-specific and non-pharmacological therapies.

What If Caregivers' Subsequent Workforce Participation Was a Measure of Palliative Care Services' Impact? An Hypothesis-Generating Study.

Background: Hospice/palliative care emphasizes excellent care for patients, but what about longer-term caregiver outcomes after their caregiving role? What is the role of services in working to ensure that caregivers can re-engage with all aspects of life, including paid employment given that this is an identified stressor for caregivers? Aim: This hypothesis-generating study aimed to explore self-reported, post-care workforce participation, and any association with hospice/palliative care contact. Design: Cross-sectional random population interviews. Setting/Participants: People in the general population were randomly selected for face-to-face interviews about well-being including end-of-life care in South Australia. Questions included experiences of people dying an expected death and whether interviewees provided care. Demographic data included current workforce participation. A regression model explored associations with workforce participation. Results: Of 8945 interviews over three years, 171 participants aged 20-60 years (working age) provided intermittent hands-on care: two in five were men and two in three had qualifications beyond high school; one in two decedents had accessed palliative care services. Reflecting the bivariable analyses, logistic regression models showed associations with workforce participation and: being male (odds ratio [OR] 6.71); use of palliative care services (OR 4.85); and higher levels of education (OR 3.54). Conclusion: An association between workforce participation after caregiving ceased and the use of palliative care services was described, controlling for key factors. Reasons may include continued working, greater rates of return to work, earlier return to work or that people in the workforce are more likely to access services.

Current pharmacological strategies for symptomatic reduction of persistent breathlessness - a literature review.

INTRODUCTION: Persistent breathlessness is a debilitating symptom that is prevalent in the community, particularly in people with chronic and life-limiting illnesses. Treatment includes different steps, including pharmacological treatment aiming to improve the symptom and optimize people's wellbeing. AREAS COVERED: PubMed and Google Scholar were screened using 'chronic breathlessness' OR 'persistent breathlessness,' AND 'pharmacological treatment,' OR 'opioids.' This review focuses on pharmacological treatments to reduce persistent breathlessness and discusses possible mechanisms involved in the process of breathlessness reduction through pharmacotherapy. Research gaps in the field of persistent breathlessness research are outlined, and future research directions are suggested. EXPERT OPINION: Regular, low-dose (≤30 mg/day), sustained-release morphine is recommended as the first-line pharmacological treatment for persistent breathlessness. Inter-individual variation in response needs to be investigated in future studies in order to optimize clinical outcomes. This includes 1) better understanding the centrally mediated mechanisms associated with persisting breathlessness and response to pharmacological therapies, 2) understanding benefit from the perspective of people experiencing persistent breathlessness, small and meaningful gains in physical activity.

Stakeholder perspectives of a pilot multicomponent delirium prevention intervention for adult patients with advanced cancer in palliative care units: A behaviour change theory-based qualitative study.

BACKGROUND: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. AIM: To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. DESIGN: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. SETTING/PARTICIPANTS: Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer. RESULTS: Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention). CONCLUSION: This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168.

Burden of respiratory problems in low-income and middle-income countries.

PURPOSE OF REVIEW: Chronic respiratory diseases are a leading cause of morbidity and mortality in low-income and middle-income countries (LMICs). We aim to review prevalence of respiratory diseases and related symptoms, which contribute significantly to burden of disease in LMICs. We report global estimates of respiratory problems amongst adults in LMICs and recent findings relating to community prevalence and impact of respiratory problems. We conclude by identifying research priorities for improved recognition and palliation of respiratory problems. RECENT FINDINGS: We report findings from 16 studies, highlighting key issues relevant to burden of respiratory problems in LMICs. COPD and associated symptoms are identified as important drivers of increasing respiratory problems in LMICs, with an estimated prevalence of 7.2%. Negative impacts of respiratory diseases include: reduced physical function (capacity to work), quality of life (depression; anxiety) and socioeconomic wellbeing (healthcare costs; earning potential). Locally appropriate palliative care interventions may improve quality of life without increasing costs. SUMMARY: Prevention and treatment of respiratory diseases is essential for improved wellbeing. We identify missed opportunities for measurement and understanding of burden caused by respiratory problems within efforts to measure illness prevalence. We highlight need for symptom management interventions, developed in context of local cultural beliefs and behaviours.

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

OBJECTIVES: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.

Persisting breathlessness and activities reduced or ceased: a population study in older men.

INTRODUCTION: Breathlessness is debilitating and increases in prevalence with age, with people progressively reducing their everyday activities to 'self-manage' it. This study aimed to evaluate the impact of breathlessness on function in terms of activities that have been reduced or ceased ('compromised') in older men. METHODS: A cross-sectional postal survey of Swedish 73-year-old man in the VAScular and Chronic Obstructive Lung disease study self-reporting on demographics, breathlessness (modified Medical Research Council (mMRC) scale, Dyspnoea-12, Multidimensional Dyspnea Scale) and its duration, anxiety/depression (Hospital Anxiety and Depression Scale), performance status (WHO Performance Status), everyday activities reduced/ceased and exertion. RESULTS: 148/828 (17.9%) respondents reported breathlessness (mMRC >2), of whom 51.9% had reduced/ceased activities compared with 9.6% who did not. Physical activity was the most common activity reduced/ceased (48.0%) followed by sexual activity (41.2%) and social activities (37.8%). Of 16.0% of respondents with mMRC 3-4 talking on the phone was affected compared with only 2.9% of respondents with mMRC 2. Worsening breathlessness was associated with increasingly sedentary lifestyles and more limited function, those reporting reduced/ceased activities had an associated increase in reporting anxiety and depression. In adjusted analyses, breathlessness was associated with increased likelihood of activities being ceased overall as well as physical and sexual activities being affected separately. CONCLUSION: Worsening breathlessness was associated with decreasing levels of self-reported physical activity, sexual activity and function. Overall, the study showed that people with persisting breathlessness modify their lifestyle to avoid it by reducing or ceasing a range of activities, seeking to minimise their exposure to the symptom.