Publications

The BETTER-B project builds on a large body of breathlessness research previously undertaken by the international consortium of partners from the UK, Italy, Ireland, Poland, Germany, Switzerland and Australia. The publications are ordered by release date.

Brighton LJ, Tunnard I, Farquhar M, Booth S, Miller S, Yi D, Bajwah S, Man WDC, Reilly CC, Ogden M, Bailey S, Ewart C, Higginson IJ, Maddocks MT. Recommendations for services for people with living with chronic breathlessness in advanced disease: results of a transparent expert consultation Chronic Respiratory Disease. 2019 Jan-Dec;16:1479973118816448. doi: 10.1177/1479973118816448. PubMed PMID: 30789022; PubMed Central PMCID: PMC6313262

Brighton LJ, Gao W, Farquhar M, Booth S, Bajwah S, Man WD, Reilly CC, Yi D, Higginson IJ, Maddocks M. Predicting outcomes following holistic breathlessness services: A pooled analysis of individual patient data. Palliat Med. 2019 Feb 15:269216319830299. doi: 10.1177/0269216319830299. [Epub ahead of print] PubMed PMID: 30764714

Lovell N, Wilcock A, Bajwah S, Etkind SN, Jolley CJ, Maddocks M, Higginson IJ. Mirtazapine for chronic breathlessness? A review of mechanistic insights and therapeutic potential. Expert Rev Respir Med. 2019 Feb;13(2):173-180. doi: 10.1080/17476348.2019.1563486. Epub 2018 Dec 30. PubMed PMID: 30596298

Brighton LJ, Miller S, Farquhar M, Booth S, Yi D, Gao W, Bajwah S, Man WD, Higginson IJ, Maddocks M. Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax. 2019 Mar;74(3):270-281. doi: 10.1136/thoraxjnl-2018-211589. Epub 2018 Nov 29. PubMed PMID: 30498004

Lovell N, Etkind SN, Bajwah S, Maddocks M, Higginson IJ. Control and Context Are Central for People With Advanced Illness Experiencing Breathlessness: A Systematic Review and Thematic Synthesis. J Pain Symptom Manage. 2019 Jan;57(1):140-155.e2. doi: 10.1016/j.jpainsymman.2018.09.021. Epub 2018 Oct 4. Review. PubMed PMID: 30291949

Lovell N, Bajwah S, Maddocks M, Wilcock A, Higginson IJ. Use of mirtazapine in patients with chronic breathlessness: A case series. Palliat Med. 2018 Oct;32(9):1518-1521. doi: 10.1177/0269216318787450. Epub 2018 Jul 20. PubMed PMID: 30028237

Maddocks M, Lovell N, Booth S, Man WD, Higginson IJ. Palliative care and management of troublesome symptoms for people with chronic obstructive pulmonary disease. Lancet. 2017 Sep 2;390(10098):988-1002. doi: 10.1016/S0140-6736(17)32127-X. Review. PubMed PMID: 28872031

Dzingina MD, Reilly CC, Bausewein C, Jolley CJ, Moxham J, McCrone P, Higginson IJ, Yi D. Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis. Palliat Med. 2017 Apr;31(4):369-377. doi: 10.1177/0269216317690994. Epub 2017 Feb 13. PubMed PMID: 28190370; PubMed Central PMCID: PMC5405827

Reilly CC, Bausewein C, Garrod R, Jolley CJ, Moxham J, Higginson IJ. Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness. Palliat Med. 2017 Oct;31(9):868-875. doi: 10.1177/0269216316680314. Epub 2016 Dec 15. PubMed PMID: 27932629; PubMed Central PMCID: PMC5613804

Simon ST, Higginson IJ, Booth S, Harding R, Weingärtner V, Bausewein C. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane Database Syst Rev. 2016 Oct 20;10:CD007354. Review. PubMed PMID: 27764523

Gysels M, Reilly CC, Jolley CJ, Pannell C, Spoorendonk F, Moxham J, Bausewein C, Higginson IJ. Dignity Through Integrated Symptom Management: Lessons From the Breathlessness Support Service. J Pain Symptom Manage. 2016 Oct;52(4):515-524. doi: 10.1016/j.jpainsymman.2016.04.010. Epub 2016 Sep 17. PubMed PMID: 27650009

Simon ST, Weingartner V, Higginson IJ, Benalia H, Gysels M, Murtagh FE, Spicer J, Linde P, Voltz R, Bausewein C. "I Can Breathe Again!" Patients' Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived From Qualitative Interviews. J Pain Symptom Manage. 2016 Aug;52(2):228-34. doi: 10.1016/j.jpainsymman.2016.02.016. Epub 2016 May 21. PubMed PMID: 27220949

Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd CJ, Booth S. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials. 2016 Apr 4;17:185. doi: 10.1186/s13063-016-1304-6. PubMed PMID: 27044249; PubMed Central PMCID: PMC4820876

Currow DC, Abernethy AP, Allcroft P, Banzett RB, Bausewein C, Booth S, Carrieri-Kohlman V, Davidson P, Disler R, Donesky D, Dudgeon D, Ekstrom M, Farquhar M, Higginson I, Janssen D, Jensen D, Jolley C, Krajnik M, Laveneziana P, McDonald C, Maddocks M, Morelot-Panzini C, Moxham J, Mularski RA, Noble S, O'Donnell D, Parshall MB, Pattinson K, Phillips J, Ross J, Schwartzstein RM, Similowski T, Simon ST, Smith T, Wells A, Yates P, Yorke J, Johnson MJ. The need to research refractory breathlessness. Eur Respir J. 2016 Jan;47(1):342-3. doi: 10.1183/13993003.00653-2015. PubMed PMID: 26721965

Maddocks M, Nolan CM, Man WD, Polkey MI, Hart N, Gao W, Rafferty GF, Moxham J, Higginson IJ. Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: a randomised double-blind, placebo-controlled trial. Lancet Respir Med. 2016 Jan;4(1):27-36. doi: 10.1016/S2213-2600(15)00503-2. Epub 2015 Dec 15. PubMed PMID: 26701362

van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ; EUROIMPACT. How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design. BMC Med. 2015 Oct 13;13:263. doi: 10.1186/s12916-015-0449-6. PubMed PMID: 26464185; PubMed Central PMCID: PMC4604738

Hutchinson A, Booth S, Currow D, Higginson I, Johnson M. Invisible suffering: breathlessness in and beyond the clinic--a reply. Lancet Respir Med. 2015 Aug;3(8):e29. doi: 10.1016/S2213-2600(15)00232-5. PubMed PMID: 26282482

Weingärtner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Otremba B, Mühlenbrock J, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; PAALiativ. Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study. Palliat Med. 2015 May;29(5):420-8. doi: 10.1177/0269216314563428. Epub 2015 Jan 29. PubMed PMID: 25634633

Dunger C, Higginson IJ, Gysels M, Booth S, Simon ST, Bausewein C. Breathlessness and crises in the context of advanced illness: A comparison between COPD and lung cancer patients. Palliat Support Care. 2015 Apr;13(2):229-37. doi: 10.1017/S147895151300120X. Epub 2014 Feb 13. PubMed PMID: 24524686

Higginson IJB, C.; Reilly, C. C.; Gao, W.; Gysels, M.; Dzingina, M.; McCrone, P.; Booth, S.; Jolley, C. J.; Moxham, J. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med. 2014 Dec;2(12):979-87. doi: 10.1016/S2213-2600(14)70226-7. Epub 2014 Oct 29. PubMed PMID: 25465642

Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med. 2014 Oct 31;12:194. doi: 10.1186/s12916-014-0194-2. PubMed PMID: 25358424; PubMed Central PMCID: PMC4222435

Moens K, Higginson IJ, Harding R; EURO IMPACT. Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manage. 2014 Oct;48(4):660-77. doi: 10.1016/j.jpainsymman.2013.11.009. Epub 2014 May 5. Review. PubMed PMID: 24801658

Weingaertner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; PAALiativ Project; PAALiativ Project. Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage. 2014 Oct;48(4):569-81.e1. doi: 10.1016/j.jpainsymman.2013.11.011. Epub 2014 Mar 12. PubMed PMID: 24613784

Simon ST, Weingärtner V, Voltz R, Higginson IJ, Bausewein C. Episodic breathlessness: a clinically relevant and rising issue. Ann Am Thorac Soc. 2014 Feb;11(2):274. doi: 10.1513/AnnalsATS.201311-407LE. PubMed PMID: 24576000

Simon ST, Weingärtner V, Higginson IJ, Voltz R, Bausewein C. Definition, categorization, and terminology of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Manage. 2014 May;47(5):828-38. doi: 10.1016/j.jpainsymman.2013.06.013. Epub 2013 Oct 2. PubMed PMID: 24095285

Weingärtner V, Bausewein C, Higginson IJ, Scheve C, Murtagh FE, Voltz R, Simon ST. Characterizing episodic breathlessness in patients with advanced disease. J Palliat Med. 2013 Oct;16(10):1275-9. doi: 10.1089/jpm.2013.0087. Epub 2013 Sep 20. PubMed PMID: 24053592; PubMed Central PMCID: PMC3791043.

Currow DC, Higginson IJ, Johnson MJ. Breathlessness--current and emerging mechanisms, measurement and management: a discussion from an European Association of Palliative Care workshop. Palliat Med. 2013 Dec;27(10):932-8. doi: 10.1177/0269216313493819. Epub 2013 Jul 9. Review. PubMed PMID: 23838379

Malik FA, Gysels M, Higginson IJ. Living with breathlessness: a survey of caregivers of breathless patients with lung cancer or heart failure. Palliat Med. 2013 Jul;27(7):647-56. doi: 10.1177/0269216313488812. Epub 2013 May 23. PubMed PMID: 23703238

Simon ST, Higginson IJ, Benalia H, Gysels M, Murtagh FE, Spicer J, Bausewein C. Episodes of breathlessness: types and patterns - a qualitative study exploring experiences of patients with advanced diseases. Palliat Med. 2013 Jun;27(6):524-32. doi: 10.1177/0269216313480255. Epub 2013 Mar 13. PubMed PMID: 23486931

Bajwah S, Ross JR, Peacock JL, Higginson IJ, Wells AU, Patel AS, Koffman J, Riley J. Interventions to improve symptoms and quality of life of patients with fibrotic interstitial lung disease: a systematic review of the literature. Thorax. 2013 Sep;68(9):867-79. doi: 10.1136/thoraxjnl-2012-202040. Epub 2012 Dec 1. Review. PubMed PMID: 23204065

Simon ST, Higginson IJ, Benalia H, Gysels M, Murtagh FE, Spicer J, Bausewein C. Episodic and continuous breathlessness: a new categorization of breathlessness. J Pain Symptom Manage. 2013 Jun;45(6):1019-29. doi: 10.1016/j.jpainsymman.2012.06.008. Epub 2012 Sep 25. PubMed PMID: 23017608

Simon ST, Niemand AM, Benalia H, Voltz R, Higginson IJ, Bausewein C. Acceptability and preferences of six different routes of drug application for acute breathlessness: a comparison study between the United Kingdom and Germany. J Palliat Med. 2012 Dec;15(12):1374-81. doi: 10.1089/jpm.2012.0249. Epub 2012 Oct 24. PubMed PMID: 23094954; PubMed Central PMCID: PMC3509360

Patel AS, Siegert RJ, Brignall K, Gordon P, Steer S, Desai SR, Maher TM, Renzoni EA, Wells AU, Higginson IJ, Birring SS. The development and validation of the King's Brief Interstitial Lung Disease (K-BILD) health status questionnaire. Thorax. 2012 Sep;67(9):804-10. doi: 10.1136/thoraxjnl-2012-201581. Epub 2012 May 3. PubMed PMID: 22555278

Bajwah S, Higginson IJ, Ross JR, Wells AU, Birring SS, Patel A, Riley J. Specialist palliative care is more than drugs: a retrospective study of ILD patients. Lung. 2012 Apr;190(2):215-20. doi: 10.1007/s00408-011-9355-7. Epub 2012 Jan 5. PubMed PMID: 22218887

Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat Care. 2011 Oct 17;10:15. doi: 10.1186/1472-684X-10-15. PubMed PMID: 22004467; PubMed Central PMCID: PMC3206451

Farquhar MC, Prevost AT, McCrone P, Higginson IJ, Gray J, Brafman-Kennedy B, Booth S. Study protocol: Phase III single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease. Trials. 2011 May 20;12:130. doi: 10.1186/1745-6215-12-130. PubMed PMID: 21599896; PubMed Central PMCID: PMC3114770

Bausewein C, Booth S, Gysels M, Kühnbach R, Higginson IJ. Effectiveness of a hand-held fan for breathlessness: a randomised phase II trial. BMC Palliat Care. 2010 Oct 19;9:22. doi: 10.1186/1472-684X-9-22. PubMed PMID: 20958972; PubMed Central PMCID: PMC2974661

Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study. Palliat Med. 2010 Dec;24(8):777-86. doi: 10.1177/0269216310378785. Epub 2010 Sep 16. PubMed PMID: 20847087

Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med. 2010 Sep;13(9):1109-18. doi: 10.1089/jpm.2010.0068. PubMed PMID: 20836635

Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonary disease. J Pain Symptom Manage. 2010 Mar;39(3):555-63. doi: 10.1016/j.jpainsymman.2009.08.009. PubMed PMID: 20303029

Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006 Jan;31(1):58-69. PubMed PMID: 1644248369

Edmonds P, Higginson I, Altmann D, Sen-Gupta G, McDonnell M. Is the presence of dyspnea a risk factor for morbidity in cancer patients? J Pain Symptom Manage. 2000 Jan;19(1):15-22. PubMed PMID: 10687322

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