Breathlessness In Advanced Disease Research Articles

Meditative movement for breathlessness in advanced COPD or cancer: a systematic review and meta-analysis.

The effect of meditative movement, which includes yoga, tai chi and qi gong, on breathlessness in advanced disease is unknown. This systematic review aims to comprehensively assess the evidence on the effect of meditative movement on breathlessness (primary outcome), health-related quality of life, exercise capacity, functional performance and psychological symptoms (secondary outcomes) in advanced disease. 11 English and Chinese language databases were searched for relevant trials. Risk of bias was assessed using the Cochrane tool. Standardised mean differences (SMDs) with 95% confidence intervals were computed. 17 trials with 1125 participants (n=815 COPD, n=310 cancer), all with unclear or high risk of bias, were included. Pooled estimates (14 studies, n=671) showed no statistically significant difference in breathlessness between meditative movement and control interventions (SMD (95% CI) 0.10 (-0.15-0.34); Chi2=30.11; I2=57%; p=0.45), irrespective of comparator, intervention or disease category. Similar results were observed for health-related quality of life and exercise capacity. It was not possible to perform a meta-analysis for functional performance and psychological symptoms. In conclusion, in people with advanced COPD or cancer, meditative movement does not improve breathlessness, health-related quality of life or exercise capacity. Methodological limitations lead to low levels of certainty in the results.

BreathEase: rationale, design and recruitment of a randomised trial and embedded mixed-methods study of a multiprofessional breathlessness service in early palliative care.

BackgroundThe Munich Breathlessness Service has adapted novel support services to the German context, to reduce burden in patients and carers from breathlessness in advanced disease. It has been evaluated in a pragmatic fast-track randomised controlled trial (BreathEase; NCT02622412) with embedded qualitative interviews and postal survey. The aim of this article is to describe the intervention model and study design, analyse recruitment to the trial and compare sample characteristics with other studies in the field.MethodsAnalysis of recruitment pathways and enrolment, sociodemographic and clinical characteristics of participants and carers.ResultsOut of 439 people screened, 253 (58%) were offered enrolment and 183 (42%) participated. n=97 (70%) carers participated. 186 (42%) people did not qualify for inclusion, mostly because breathlessness could not be attributed to an underlying disease. All participants were self-referring; 60% through media sources. Eligibility and willingness to participate were associated to social networks and illness-related activities as recruitment routes. Mean age of participants was 71 years (51% women), with COPD (63%), chronic heart failure (8%), interstitial lung disease (9%), pulmonary hypertension (6%) and cancer (7%) as underlying conditions. Postal survey response rate was 89%. Qualitative interviews were conducted with 16 patients and nine carers.ConclusionThe BreathEase study has a larger and more heterogeneous sample compared to other trials. The self-referral-based and prolonged recruitment drawing on media sources approximates real-world conditions of early palliative care. Integrating qualitative and quantitative components will allow a better understanding and interpretation of the results of the main effectiveness study.

Effectiveness of a specialised breathlessness service for patients with advanced disease in Germany: a pragmatic fast-track randomised controlled trial (BreathEase).

The effectiveness of the Munich Breathlessness Service (MBS), integrating palliative care, respiratory medicine and physiotherapy, was tested in the BreathEase trial in patients with chronic breathlessness in advanced disease and their carers. BreathEase was a single-blinded randomised controlled fast-track trial. The MBS was attended for 5-6 weeks; the control group started the MBS after 8 weeks of standard care. Randomisation was stratified by cancer and the presence of a carer. Primary outcomes were patients' mastery of breathlessness (Chronic Respiratory Disease Questionnaire (CRQ) Mastery), quality of life (CRQ QoL), symptom burden (Integrated Palliative care Outcome Scale (IPOS)) and carer burden (Zarit Burden Interview (ZBI)). Intention-to-treat (ITT) analyses were conducted with hierarchical testing. Effectiveness was investigated by linear regression on change scores, adjusting for baseline scores and stratification variables. Missing values were handled with multiple imputation. 92 patients were randomised to the intervention group and 91 patients were randomised to the control group. Before the follow-up assessment after 8 weeks (T1), 17 and five patients dropped out from the intervention and control groups, respectively. Significant improvements in CRQ Mastery of 0.367 (95% CI 0.065-0.669) and CRQ QoL of 0.226 (95% CI 0.012-0.440) score units at T1 in favour of the intervention group were seen in the ITT analyses (n=183), but not in IPOS. Exploratory testing showed nonsignificant improvements in ZBI. These findings demonstrate positive effects of the MBS in reducing burden caused by chronic breathlessness in advanced illness across a wide range of patients. Further evaluation in subgroups of patients and with a longitudinal perspective is needed.

Editorial introductions

Editorial introductions

Randomised, double-blind, multicentre, mixed-methods, dose-escalation feasibility trial of mirtazapine for better treatment of severe breathlessness in advanced lung disease (BETTER-B feasibility)

New treatments are required for severe breathlessness in advanced disease. We conducted a randomised feasibility trial of mirtazapine over 28 days in adults with a modified medical research council breathlessness...

Updates in opioid and nonopioid treatment for chronic breathlessness.

Chronic breathlessness is a troublesome symptom experienced by people with advanced malignant and nonmalignant disease. Disease-directed therapies are often insufficient in the management of chronic breathlessness. Therefore, pharmacological and nonpharmacological breathlessness-specific interventions should be considered for select patients. There is some evidence to support the use of low-dose opioids (≤30 mg morphine equivalents per day) for the relief of breathlessness in the short term. However, additional studies are needed to understand the efficacy of opioids for chronic breathlessness in the long term.Nonopioid therapies, including inspiratory muscle training, fan-to-face therapy, L-menthol and inhaled nebulized furosemide show some promise for the relief of breathlessness in advanced disease. There is insufficient evidence to support the use of anxiolytics and benzodiazepines and cannabis for chronic breathlessness. More research is needed to identify therapies for the management of chronic breathlessness.

To What Extent Do the NRS and CRQ Capture Change in Patients' Experience of Breathlessness in Advanced Disease? Findings From a Mixed-Methods Double-Blind Randomized Feasibility Trial

ContextChronic or refractory breathlessness is common and distressing. To evaluate new treatments, outcome measures that capture change in patients' experience are needed. ObjectivesTo explore the extent to which the numerical rating scale (NRS) worst and average, and the Chronic Respiratory Questionnaire capture change in patients' experience during a trial of mirtazapine for refractory breathlessness. MethodsConvergent mixed-methods design embedded within a randomized trial comprising 1) semi-structured qualitative interviews (considered to be the gold standard) and 2) outcome measure data collected pre- and post-intervention. Data were integrated, exploring examples where findings agreed and disagreed. Adults with advanced cancer, chronic obstructive pulmonary disease, interstitial lung disease, or chronic heart failure, with a modified Medical Research Council dyspnea scale grade 3 or 4 were recruited from three U.K. sites. ResultsData were collected for 22 participants. Eleven had a diagnosis of chronic obstructive pulmonary disease, eight interstitial lung disease, two chronic heart failure, and one cancer. Median age was 71 (56–84) years. Sixteen participants were men. Changes in the qualitative data were commonly captured in the NRS (worst and average) and the Chronic Respiratory Questionnaire. The NRS worst captured change most frequently. Improvement in the emotional domain was associated with physical changes, improved confidence, and control. ConclusionThis study found that the NRS using the question “How bad has your breathlessness felt at its worst over the past 24 hours?” captured change across multiple domains, and therefore may be an appropriate primary outcome measure in trials in this population. Future work should confirm the construct validity of this question.

Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.

What Constitutes Good Health Care for Patients with Breathlessness? Perspectives of Patients, Caregivers, and Health Care Professionals.

Background/Objective: Breathlessness is a highly prevalent and distressing symptom in patients with cancer and advanced chronic diseases. Symptom management is often overlooked. We explored the experiences of patients, caregivers, and health care providers (HCPs) and their expectations for future service developments. Design: This is a multiperspective qualitative study drawing on semistructured interviews. Setting/Subjects: Participants were recruited from palliative, respiratory, and cardiology departments of the Munich University Hospital and from a chronic obstructive pulmonary disease (COPD) patient group. Measurements: Interviews were analyzed using qualitative content analysis. Subcategories used the directional views of participants (positive, negative, and indifferent). The coding tree identified three categories: (1) attributes of symptom management, (2) practice pattern gaps, and (3) components of good practice. Results: Ten patients (5 female, 65.2 median age; COPD n = 3, cancer n = 3, chronic heart failure n = 2, and lung fibrosis n = 2), 3 caregivers (2 female, 53.6 median age), and 10 HCPs were interviewed. Patients and caregivers felt stressed and frustrated due to a lack of awareness regarding the symptom burden and little support from HCPs. HCPs pointed to a lack of therapeutic concepts and unclear assumptions of responsibilities. Specialist breathlessness services are perceived as addressing important gaps in professional practice from the viewpoint of all stakeholders. Accessibility and collaboration with other local health care services are important features of such specialist services. Conclusions: Chronic refractory breathlessness in advanced disease is managed insufficiently for most patients, caregivers, and HCPs. Increased knowledge about effective interventions and availability of skills-based training for patients, caregivers, and HCPs would help in breathlessness management.

Respiratory adverse effects of opioids for breathlessness: a systematic review and meta-analysis.

Previous studies have shown that opioids can reduce chronic breathlessness in advanced disease. However, physicians remain reluctant to prescribe opioids for these patients, commonly due to fear of respiratory adverse effects. The aim of this study was to systematically review reported respiratory adverse effects of opioids in patients with advanced disease and chronic breathlessness.PubMed, Embase, the Cochrane Central Register of Controlled Trials, CINAHL, ClinicalTrials.gov and the reference lists of relevant systematic reviews were searched. Two independent researchers screened against predefined inclusion criteria and extracted data. Meta-analysis was conducted where possible.We included 63 out of 1990 articles, describing 67 studies. Meta-analysis showed an increase in carbon dioxide tension (0.27 kPa, 95% CI 0.08-0.45 kPa,) and no significant change in oxygen tension and oxygen saturation (both p>0.05). Nonserious respiratory depression (definition variable/not stated) was described in four out of 1064 patients. One cancer patient pretreated with morphine for pain needed temporary respiratory support following nebulised morphine for breathlessness (single case study).We found no evidence of significant or clinically relevant respiratory adverse effects of opioids for chronic breathlessness. Heterogeneity of design and study population, and low study quality are limitations. Larger studies designed to detect respiratory adverse effects are needed.

Carers and breathlessness.

Informal carers play a key role in supporting patients living with breathlessness in advanced disease, but with considerable impacts on their own well being. The purpose was to review recent advances in our understanding of the caring role in refractory breathlessness, its impacts on carers, and interventions to support them. A systematic literature search resulted in 28 included articles that could be mapped to four broad areas of carer enquiry: the carer role (n = 6), role impact (n = 7), carer support (n = 11) and carer views (n = 4). Search terms focused on breathlessness, but few of the included articles were exclusively on breathlessness: most were disease-related, predominantly chronic obstructive pulmonary disease (COPD). There were a range of methodologies, including four systematic reviews; UK studies were most common. Carers of patients with breathlessness take on a role characterized by uncertainty, largely unsupported by healthcare professionals (HCPs). HCP acknowledgement of these carers, their contribution and the impact of the caring role, is lacking. The patient-carer dyad should be considered the unit of care. Carer intervention should be individualized, supporting carers as clients and coworkers. There was a dearth of studies recruiting via primary care, focusing on conditions other than COPD and longitudinal work.

Breathlessness services as a new model of support for patients with respiratory disease.

The complexity of breathlessness in advanced disease requires a diversity of measures ideally tailored to the individual patient needs. ‘Breathlessness services’ have been systematically developed and tested to provide specific interventions and support for patients and their carers. The aim of this article is (1) to identify and describe components of breathlessness services and (2) to describe the clinical model of one specific service in more detail. This article is based on a systematic review evaluating randomized controlled trials (RCTs) and quasi-RCTs which examine the effectiveness of services aiming to improve breathlessness of patients with advanced disease. The Munich Breathlessness Service (MBS) is described in detail as an example of a recently set-up specialist service. Five service models were identified which were tested in six RCTs. Services varied regarding structure and composition with face-to-face meetings, some with additional telephone contacts. Service duration was median 6 weeks (range 2–12 weeks). Involved professions were nurses, various therapists and, in two models, also physicians. The breathing–thinking–functioning model was targeted by various service components. The MBS is run by a multi-professional team mainly with physicians and physiotherapists. Patients are seen weekly over 5–6 weeks with an individualized management plan. Breathlessness services are a new model for patients with advanced disease integrating symptom management and early access to palliative care.

Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention.

IntroductionBreathlessness is a common symptom of advanced disease placing a huge burden on patients, health systems and informal carers (families and friends providing daily help and support). It causes distress and isolation. Carers provide complex personal, practical and emotional support yet often feel ill-prepared to care. They lack knowledge and confidence in their caring role. The need to educate carers and families about breathlessness is established, yet we lack robustly developed carer-targeted educational interventions to meet their needs.MethodsWe conducted a qualitative interview study with twenty five purposively-sampled patient-carer dyads living with breathlessness in advanced disease (half living with advanced cancer and half with advanced chronic obstructive pulmonary disease (COPD). We sought to identify carers’ educational needs (including what they wanted to learn about) and explore differences by diagnostic group in order to inform an educational intervention for carers of patients with breathlessness in advanced disease.ResultsThere was a strong desire among carers for an educational intervention on breathlessness. Six key topics emerged as salient for them: 1) understanding breathlessness, 2) managing anxiety, panic and breathlessness, 3) managing infections, 4) keeping active, 5) living positively and 6) knowing what to expect in the future. A cross-cutting theme was relationship management: there were tensions within dyads resulting from mismatched expectations related to most topics. Carers felt that knowledge-gains would not only help them to support the patient better, but also help them to manage their own frustrations, anxieties, and quality of life. Different drivers for education need were identified by diagnostic group, possibly related to differences in caring role duration and resulting impacts.ConclusionMeeting the educational needs of carers requires robustly developed and evaluated interventions. This study provides the evidence-base for the content of an educational intervention for carers of patients with breathlessness in advanced disease.

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey

ContextCarers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. ObjectivesTo establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. MethodsAn online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. ResultsMost clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an ‘add-on’; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. ConclusionThis survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.

“I Can Breathe Again!” Patients' Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived From Qualitative Interviews

ContextEpisodic breathlessness causes additional distress to breathless patients with advanced disease, but management is still insufficient and there is a lack of knowledge on effective coping strategies. ObjectivesThe aim was to explore patients' self-management strategies for episodic breathlessness. MethodsIn-depth interviews with patients suffering from episodic breathlessness as a result of chronic heart failure, chronic obstructive pulmonary disease, lung cancer, or motor neuron disease were conducted. Interviews were transcribed verbatim and analyzed guided by the analytic hierarchy of Framework analysis. ResultsA total of 51 participants were interviewed (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer, and nine motor neuron disease; age, mean [SD], 68 [12], 41% women, median Karnofsky index 60%). They described six main strategies for coping with episodes of breathlessness: reduction of physical exertion, cognitive and psychological strategies, breathing techniques and positions, air and oxygen, drugs and medical devices, and environmental and other strategies. Some strategies were used in an opposing way, e.g., concentrating on the breathing vs. distraction from any thoughts of breathlessness or laying down flat vs. standing up and raising hands. ConclusionPatients used a number of different strategies to cope with episodic breathlessness, adding more detailed understanding of existing strategies for breathlessness. The findings, therefore, may provide a valuable aid for health care providers, affected patients, and their relatives.

WHAT DO INFORMAL CARERS WANT TO LEARN ABOUT BREATHLESSNESS IN ADVANCED DISEASE AND HOW DO THEY WANT TO LEARN IT?

IntroductionBreathlessness is a distressing, disabling symptom of advanced disease with considerable impact on informal carers. We know that carers experience anxiety, isolation, restriction of activity, lack of support and powerlessness. Despite this knowledge the evidence-base for educational interventions to support informal carers and enhance their caregiving capacity is limited.Aim(s) and method(s)To identify informal carer preferences for learning content and delivery modes of an educational intervention for carers on breathlessness in advanced disease. In-depth interviews with a purposive sample of 24 patient-carer dyads from two disease groups (cancer and COPD) to facilitate exploration of similarities and differences in education needs and preferences for differing disease trajectories. Analysed using a Framework approach.ResultsThere was a notable degree of overlap in content and delivery-mode preferences among informal carers across the two disease trajectories. Five areas of learning were salient for carers: understanding breathlessness (causes and experience); managing anxiety and panic; helpful and safe levels of activity; maintaining quality of life; and, knowing what to expect in the future. Intervention delivery-mode preferences included face-to-face group learning incorporating clinical-practitioner expertise and a supportive element through sharing experiences, ‘work-arounds’ and useful tips with peers. Carers generally wanted to learn with their patient so short sessions, not too early in the day, in venues accessible for breathless patients were important practical considerations.ConclusionsAn evidence-based educational intervention needs to be broad in scope, incorporating both clinical-practitioner expertise and peer experience. It should also be flexible to accommodate a variety of delivery-mode preferences and personalised content.

Managing breathlessness in advanced disease

Breathlessness in advanced malignant and non-malignant disease is frequently chronic and refractory. It persists at rest and on minimal activity despite optimal management of the underlying disease process. The terms dyspnoea (‘difficult breathing’), breathlessness and shortness of breath are

Definition, Categorization, and Terminology of Episodic Breathlessness: Consensus by an International Delphi Survey

ContextEpisodic breathlessness is a common and distressing symptom in patients with advanced disease. Still, it is not yet clearly defined. ObjectivesThe aim of this work was to develop an international definition, categorization, and terminology of episodic breathlessness. MethodsAn online Delphi survey was conducted with international breathlessness experts. We used a structured questionnaire to identify specific aspects and reach agreement on a definition, categorization, and terminology (five-point Likert scale). Consensus was defined in advance as ≥70% agreement. ResultsThirty-one of 68 (45.6%), 29 of 67 (43.3%), and 33 of 67 (49.3%) experts responded in the first, second, and third rounds, respectively. Participants were 20–79 years old, about 60% male, and more than 75% rated their own breathlessness expertise as moderate to high. After three rounds, consensus was reached on a definition, categorization, and terminology (84.4%, 96.3%, and 92.9% agreement). The final definition includes general and qualitative aspects of the symptom, for example, time-limited severe worsening of intensity or unpleasantness of breathlessness in the patient's perception. Categories are predictable or unpredictable, depending on whether any triggers can be identified. ConclusionThere is high agreement on clinical and operational aspects of episodic breathlessness in advanced disease among international experts. The consented definition and categorization may serve as a catalyst for clinical and basic research to improve symptom control and patients' quality of life.

Acceptability and Preferences of Six Different Routes of Drug Application for Acute Breathlessness: A Comparison Study between the United Kingdom and Germany

Opioids are the drugs of choice for management of breathlessness in advanced disease, but acute episodic breathlessness remains difficult to manage. New routes of opioid applications with quicker onset of action seem attractive for the management of episodic breathlessness. This study aimed to determine the acceptability and preference of different routes of opioid applications in patients suffering from breathlessness due to advanced disease. The study consisted of structured face-to-face interviews with patients suffering from breathlessness due to lung cancer (LC), chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and motor neurone disease (MND). Images and explanation were used to illustrate six application forms (oral, inhaled, sublingual, intranasal, buccal, transmucosal). Participants numbered 119 (UK n=48, Germany n=71), 60% male, mean age 67.7 years (SD 9.9); 50% suffered from COPD. Inhaled was the most accepted (87%) and preferred (68%) route of application, followed by sublingual (45%/13%) and intranasal (42%/8%). The oral was least accepted (24%) and least preferred (9%) although nearly all participants had previous experiences with it (97%). Ratings were similar in both countries but different for preferences of sublingual (UK>Germany) and intranasal (Germany>UK). In general, participants from the UK rated more often "yes" for acceptability of all routes compared to Germany. Inhaled was the most accepted and preferred route of application, but no route seemed to be acceptable to all patients. Therefore, individual patient preferences should be explored before drug prescription to enhance compliance and convenience.

The Evidence Base for Oxygen for Chronic Refractory Breathlessness: Issues, Gaps, and a Future Work Plan

Breathlessness or “shortness of breath,” medically termed dyspnea, is a common and distressing symptom featuring strongly in advanced lung, cardiac, and neuromuscular diseases; its prevalence and intensity increase as death approaches. However, despite the increasing understanding in the genesis of breathlessness, as well as an increasing portfolio of treatment options, breathlessness is still difficult to manage and engenders helplessness in caregivers and health care professionals and fear for patients. Although hypoxemia does not appear to be the dominant driver for breathlessness in advanced disease, the belief that oxygen is important for the relief of acute, chronic, and acute-on-chronic shortness of breath is firmly embedded in the minds of patients, caregivers, and health care professionals. This article presents current understanding of the use of oxygen for treating refractory breathlessness in advanced disease. The objective is to highlight what is still unknown, set a research agenda to resolve these questions, and highlight methodological issues for consideration in planned studies.