What's trending in breathlessness research? Proceedings from the 8th Annual Meeting of the Breathlessness Research Interest Group

Chin, Chloe; Butcher, Hanne Holt; Spathis, Anna; Ryan, Richella; Johnson, Miriam J.; Pattinson, Kyle T.S.; Currow, David C.; Banzett, Robert B.; Yorke, Janelle; Clayson, Helen; Macnaughton, Jane; Penfold, Clarissa; Farquhar, Morag

doi:10.1179/1743291x15y.0000000005

Cited by 2 publications

(17 citation statements)

References 25 publications

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“…More robust evidence has emerged in recent years, underscoring the interest and relevance of this topic to health and social care. A scoping search from 2005 onwards identified four RCTs, 91,94,95,99,100 as well as a number of prospective cohort studies, 101,102 qualitative studies, 103-107 narrative reviews or opinion pieces 3,7,18,[108][109][110][111][112][113][114][115][116][117][118][119][120][121][122] and consensus statements. 2,56,123,124 No systematic reviews have assessed the clinical effectiveness or cost-effectiveness of these services.…”

Section: Scoping and Need For Evidence Synthesismentioning

confidence: 99%

“…Five RCTs were designed as pilot/feasibility studies, 90,99,155,157 and seven as effectiveness studies. 91,94,95,98,100,154,155 Nine studies 90,91,95,98,[155][156][157][158] compared the services to usual care, and two compared one versus three contacts with a service. 99,100 In one study, 90 the control group were not offered training or counselling, but were encouraged to talk freely about their breathlessness and disease.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

“…Nine studies enrolled only cancer patients, 90,91,98-100,155-157 two enrolled only patients with non-malignant disease 95 or COPD, 154 and one study enrolled patients with any advanced disease. 94 Of the 979 total patients recruited (range 22 99 to 156 100 ), there were 757 (77.3%) with advanced cancer and 180 (18.4%) with advanced COPD; the remaining participants (4.3%) had other non-malignant diseases, including interstitial lung disease or heart failure. The controlled studies assessed a wide variety of outcome measures (see Appendix 5), the most common being breathlessness intensity, 89,90,94,99,[154][155][156][157][158] distress due to breathlessness, 90,91,95,98,99,[155][156][157][158] and anxiety and depression.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

“…Quantitative data around satisfaction with, or experiences of, the services were reported in seven studies, which represented the views of 543 patients (60.77% with cancer). 99,100,103,157,161,162,168…”

Section: Patient and Public Involvementmentioning

confidence: 99%

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Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

Maddocks

Brighton

Farquhar

et al. 2019

Health Serv Deliv Res

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Background Breathlessness is a common and distressing symptom of many advanced diseases, affecting around 2 million people in the UK. Breathlessness increases with disease progression and often becomes chronic or refractory. Breathlessness-triggered services that integrate holistic assessment and specialist palliative care input as part of a multiprofessional approach have been developed for this group, offering tailored interventions to support self-management and reduce distress. Objectives The aim was to synthesise evidence on holistic breathlessness services for people with advanced disease and chronic or refractory breathlessness. The objectives were to describe the structure, organisation and delivery of services, determine clinical effectiveness, cost-effectiveness and acceptability, identify predictors of treatment response, and elicit stakeholders’ evidence-based priorities for clinical practice, policy and research. Design The mixed-methods evidence synthesis comprised three components: (1) a systematic review to determine the clinical effectiveness, cost-effectiveness and acceptability of holistic breathlessness services; (2) a secondary analysis of pooled individual data from three trials to determine predictors of clinical response; and (3) a transparent expert consultation (TEC), comprising a stakeholder workshop and an online consensus survey, to identify stakeholders’ priorities. Results Thirty-seven papers reporting on 18 holistic breathlessness services were included in the systematic review. Most studies enrolled people with thoracic cancer, were delivered over 4–6 weeks, and included breathing training, relaxation techniques and psychological support. Meta-analysis demonstrated significant reductions in the Numeric Rating Scale (NRS) distress due to breathlessness, significant reductions in the Hospital Anxiety and Depressions Scale (HADS) depression scores, and non-significant reductions in the Chronic Respiratory Disease Questionnaire (CRQ) mastery and HADS anxiety, favouring the intervention. Recipients valued education, self-management interventions, and expertise of the staff in breathlessness and person-centred care. Evidence for cost-effectiveness was limited and inconclusive. The responder analysis (n = 259) revealed baseline CRQ mastery and NRS distress to be strong predictors of the response to breathlessness services assessed by these same measures, and no significant influence from baseline breathlessness intensity, patient diagnosis, lung function, health status, anxiety or depression. The TEC elicited 34 priorities from stakeholders. Seven priorities received high agreement and consensus, reflecting stakeholders’ (n = 74) views that services should be person-centred and multiprofessional, share their breathlessness management skills with others, and recognise the roles and support needs of informal carers. Limitations The evidence synthesis draws predominantly from UK services and may not be generalisable to other settings. Some meta-analyses were restricted by reporting biases and statistical heterogeneity. Conclusions Despite heterogeneity in composition and delivery, holistic breathlessness services are highly valued by recipients and can lead to significant improvements in the distress caused by breathlessness and depression. Outcomes of improved mastery and reduced distress caused by breathlessness are not influenced by patient diagnosis, lung function or health status. Stakeholders highlighted the need for improved access to person-centred, multiprofessional breathlessness services and support for informal carers. Future work Our research suggests that key therapeutic components of holistic breathlessness services be considered in clinical practice and models of delivery and educational strategies to address stakeholders’ priorities tested. Study registration This study is registered as PROSPERO CRD42017057508. Funding The National Institute for Health Research (NIHR) Health Services and Delivery programme. Matthew Maddocks, Wei Gao and Irene J Higginson are supported by the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London; Matthew Maddocks is supported by a NIHR Career Development Fellowship (CDF-2017-009), William D-C Man is supported by the NIHR CLAHRC Northwest London and Irene J Higginson holds a NIHR Emeritus Senior Investigator Award.

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Section: Scoping and Need For Evidence Synthesismentioning

confidence: 99%

Section: Patient and Public Involvementmentioning

confidence: 99%

Section: Patient and Public Involvementmentioning

confidence: 99%

Section: Patient and Public Involvementmentioning

confidence: 99%

See 2 more Smart Citations

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

Maddocks

Brighton

Farquhar

et al. 2019

Health Serv Deliv Res

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“…However, at a meeting of the Breathlessness Research Interest Group in Cambridge, UK, considerable research activity elucidating the underlying mechanisms and experiences of the symptom, novel assessments and treatments and development of services to adequately meet the needs of patients with breathlessness and their carers was demonstrated 55. Future research will address our understanding of the neurophysiological basis of breathlessness, and neuroimaging studies will pave the way forward with new imaging modalities and exploration of new areas of significance in the brain 56…”

Section: Future Research Questionsmentioning

confidence: 99%

Managing breathlessness: a palliative care approach

Chin

Booth

2016

Postgraduate Medical Journal

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Breathlessness is an important and common symptom globally, affecting patients with a variety of malignant and non-malignant diseases. It causes considerable suffering to patients and also their families, and is a significant cost to healthcare systems. Optimal management of the symptom should therefore be of interest and importance to a wide range of clinicians. Best practice in the management of breathlessness consists of both non-pharmacological and pharmacological interventions as evidenced by recent randomised controlled trials of multidisciplinary breathlessness support services. As well as providing evidence for integration of early palliative care into respiratory services, these revealed that patient distress due to breathlessness can be significantly reduced and better outcomes can be achieved at lower cost than standard care.

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What's trending in breathlessness research? Proceedings from the 8th Annual Meeting of the Breathlessness Research Interest Group

Cited by 2 publications

References 25 publications

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis

Managing breathlessness: a palliative care approach

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