Skip to main content

02 February 2022

Multinational survey reveals substantial differences in approach to chronic breathlessness management

Results from a multinational survey finds significant differences in approaches to chronic breathlessness management among physicians.

Breathlessness woman holding chest csi 780x450

A survey into the experiences and attitudes of respiratory medicine and palliative care physicians has revealed substantial differences in approaches between specialties, and between patients with malignant and non-malignant lung disease.

Findings from the BETTER-B multinational survey show that physicians with better knowledge of clinical practice guidelines were more likely to recommend evidence-based treatments for breathlessness such as opioids and pulmonary rehabilitation. These results suggest a need for improved dissemination and uptake of jointly developed breathlessness management guidelines.

Breathlessness is a highly prevalent symptom of advanced chronic respiratory diseases and lung cancer, and usually becomes increasingly severe with disease progression and at end of life. Chronic or refractory breathlessness is defined as disabling breathlessness which persists despite optimal disease management.

Evidence-based approaches cited in international and national clinical guidelines include non-drug treatments such as pulmonary rehabilitation and use of a handheld fan. Drug treatments for breathlessness are however limited to moderate evidence in support of low-dose opioids, such as morphine. A lack of licenced drug treatment options, together with a lack of clinician knowledge, experience and standardised treatment approach, contributes to under-recognition and under-treatment of this highly distressing symptom.

Researchers from the BETTER-B research programme, led by Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation and the Centre for Human & Applied Physiological Sciences, King’s College London, as well as international partners, conducted a multinational survey of respiratory medicine and palliative care physicians seeking to understand differences in approaches to breathlessness in malignant and non-malignant disease between the specialties. Respondents were asked to consider how they would manage chronic refractory breathlessness in case vignettes of advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC). The survey also focussed on whether the physicians’ approaches to breathlessness were influenced by knowledge of treatment guidelines for palliative care of non-malignant lung diseases.

Our study identified opportunities to improve clinical management of people suffering from chronic breathlessness through education and promotion of evidence-based treatment options and careful evaluation of breathlessness symptoms. We were encouraged by the enthusiasm of respondents for early integration of palliative care and respiratory medicine services in the care of patients with refractory breathlessness.

Professor Małgorzata Krajnik, co-lead author (Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Toruń, Poland)

The research findings, recently published in BMC Pulmonary Medicine, include:

  • Analysis of 450 questionnaires, from 348 respiratory medicine physicians (77% of responses) and 102 palliative care physicians (23% of responses). Respiratory medicine (RM) physicians practiced across 31 and palliative care (PC) across 13 European countries, with largest representation from the UK (18% and 36%, respectively). A further 59 (13%) responses were from non-European countries including India, USA and several South American countries.
  • PC physicians were more likely than RM physicians to indicate routine use (often/always) of opioids across all three conditions (COPD: 92% vs. 39%, fILD: 83% vs. 36%, LC: 95% vs. 76%).
  • Significantly more PC physicians than RM physicians continue to routinely use benzodiazepines for COPD (33% vs. 10%) and fILD (25% vs. 12%), despite a lack of evidence supporting the use of benzodiazepines in the routine management of chronic breathlessness.
  • 62% of RM physicians reported routine use of a breathlessness score, compared to only 13% of PC physicians.
  • RM physicians were more likely than PC physicians to prioritise exercise training/rehabilitation for COPD (49% vs. 7%) and fILD (30% vs. 18%).
  • Respondents who reported reading guidelines were more likely to: routinely use a breathlessness score; use opioids and refer to pulmonary rehabilitation in COPD; refer to PC in fILD; and use a handheld fan in COPD, fILDand LC.

Our findings suggest the importance of improved uptake and dissemination of evidence-based breathlessness treatment guidelines, and that of understanding the symptom and impact on the individual rather than operating in disease silos. Concerns around the side effect profile of morphine pose a barrier to opioid prescription, particularly by respiratory physicians, and highlight an urgent need to develop new drug treatments for breathlessness.

Dr Caroline Jolley, senior author and lead for the BETTER-B survey (Centre for Human & Applied Physiological Sciences, King's College London)

The need for evidence-based guidelines on breathlessness management has been highlighted in this survey. Our Better-B programme will deliver a step change through the production and dissemination of European wide easily accessible multi-lingual guidance on the management of breathlessness in palliative, supportive and end of life care.

Professor Irene J Higginson, overall lead for the BETTER-B programme (Cicely Saunders Institute, King's College London)

The study is co-sponsored by King’s College London and University College Dublin, Ireland. 

In this story

Image of Irene Higginson

Executive Dean, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care

Caroline Headshot

Reader in Human Physiology