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Do guidelines influence breathlessness management in advanced lung diseases? A multinational survey of respiratory medicine and palliative care physicians

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Malgorzata Krajnik, Nilay Hepgul, Andrew Wilcock, Ewa Jassem, Tomasz Bandurski, Silvia Tanzi, Steffen T. Simon, Irene Higginson, Caroline Jolley

Original languageEnglish
Article number41
JournalBMC pulmonary medicine
Issue number1
Early online date19 Jan 2022
Accepted/In press31 Dec 2021
E-pub ahead of print19 Jan 2022
Published19 Jan 2022

Bibliographical note

Funding Information: BETTER-B is funded by the European Union’s Horizon2020 research and innovation programme under grant agreement No. 825319. We also thank Cicely Saunders International for support towards the breathlessness research programme at the Cicely Saunders Institute, which contributed to this study. Higginson is an NIHR Senior Investigator Emeritus. BETTER-B is also supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the European Commission, the NIHR or the Department of Health and Social Care. Funding Information: Our thanks go to the ERS, EAPC and Palliative Care Formulary for disseminating the survey among their members. We would also like to thank Dr Natasha Smallwood for sharing her survey structure with us. BETTER-B (BETterTreatmEnts for Refractory Breathlessness in Palliative and End of Life Care) is an international, multicentre study, at the centre of which is a randomised controlled pragmatic trial of mirtazapine to alleviate breathlessness in palliative and end of life care (EudraCT 2019-002001-21), led by King?s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, UK. Chief Investigator?Professor Irene Higginson (KCL, UK). Co-Investigators?UCD, Ireland: Professor Karen Ryan; AUSL, Italy: Dr. Massimo Costantini, Dr. Domenico Merlo; UMK, Poland: Assistant Professor Malgorzata Krajnik; KOELN, Germany: Dr. Steffen Simon; GUM, Poland: Professor Ewa Jassem; UCSC, Italy: Professor Giovanni Gambassi; UMUEN, Germany: Professor Claudia Bausewein; NOTTS, UK: Dr. Andrew Wilcock; UTS, Australia: Professor David Currow; ERS: Ms. Valerie Vaccaro; KCL, UK: Dr. Sabrina Bajwah, Dr. Matthew Maddocks. Co-Sponsor Representatives?KCL, UK: Ms. Jackie Pullen, Ms. Amy Holton; UCD, Ireland: Professor Peter Doran, Ms. Rabia Hussain, Ms. Anna Malara. Project Managers?KCL, UK: Dr. Nilay Hepgul, Dr. Adejoke Oluyase. Clinical Trials Research Unit?LEEDS, UK: Professor Julia Brown (co-investigator), Dr. Sarah Brown, Mr. Alasdair Fellows, Mr. Richard Brindle, Mrs. Claire Dimbleby, Mrs. Geraldine Murden, Ms. Eszter Katona, Ms. Fiona Walker. Health Economics?TCD, Ireland: Professor Charles Normand (co-investigator), Dr. Samantha Smith, Ms. Jingjing Jiang. Consortium members?KCL, UK: Mrs. Hinna Mir, Dr. Caroline Jolley, Ms. Olivia Dix, Ms. Margaret Ogden; UCD, Ireland: Ms. Brenda Molloy, Dr. Emer Kelly; Ms. Faye Regan, AUSL, Italy: Dr. Silvia Tanzi, Dr. Candida Bonelli; UMK, Poland: Ms. Agnieszka Arendt-Nowakowska, Ms. Malgorzata Fopka-Kowalczyk, Ms. Sabina Panfilak; KOELN, Germany: Mrs. Yvonne Eisenmann, Dr. Anne Pralong, Professor Raymond Voltz; GUM, Poland: Mr. Mateusz Kirjak, Mr. Piotr Janowiak; UMUEN, Germany: Mr. Jeremias Bazata; NOTTS, UK: Dr. Charlotte Bolton, Dr. Gisli Jenkins; ELF: Mrs. Pippa Powell; HULL, UK: Professor Miriam Johnson. Publisher Copyright: © 2022, The Author(s).



King's Authors


Background: Respiratory medicine (RM) and palliative care (PC) physicians’ management of chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC), and the influence of practice guidelines was explored via an online survey. Methods: A voluntary, online survey was distributed to RM and PC physicians via society newsletter mailing lists. Results: 450 evaluable questionnaires (348 (77%) RM and 102 (23%) PC) were analysed. Significantly more PC physicians indicated routine use (often/always) of opioids across conditions (COPD: 92% vs. 39%, fILD: 83% vs. 36%, LC: 95% vs. 76%; all p < 0.001) and significantly more PC physicians indicated routine use of benzodiazepines for COPD (33% vs. 10%) and fILD (25% vs. 12%) (both p < 0.001). Significantly more RM physicians reported routine use of a breathlessness score (62% vs. 13%, p < 0.001) and prioritised exercise training/rehabilitation for COPD (49% vs. 7%) and fILD (30% vs. 18%) (both p < 0.001). Overall, 40% of all respondents reported reading non-cancer palliative care guidelines (either carefully or looked at them briefly). Respondents who reported reading these guidelines were more likely to: routinely use a breathlessness score (χ 2 = 13.8; p < 0.001), use opioids (χ 2 = 12.58, p < 0.001) and refer to pulmonary rehabilitation (χ 2 = 6.41, p = 0.011) in COPD; use antidepressants (χ 2 = 6.25; p = 0.044) and refer to PC (χ 2 = 5.83; p = 0.016) in fILD; and use a handheld fan in COPD (χ 2 = 8.75, p = 0.003), fILD (χ 2 = 4.85, p = 0.028) and LC (χ 2 = 5.63; p = 0.018). Conclusions: These findings suggest a need for improved dissemination and uptake of jointly developed breathlessness management guidelines in order to encourage appropriate use of existing, evidence-based therapies. The lack of opioid use by RM, and continued benzodiazepine use in PC, suggest that a wider range of acceptable therapies need to be developed and trialled.

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