Breathlessness Programme publications
Publications in Scientific Journals
Gysels M, Higginson IJ. Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources. Palliat Support Care. 2009 Jun; 7(2):153-62.
Gysels M, Higginson IJ. Self-management for breathlessness in COPD: the role of pulmonary rehabilitation. Chronic Respiratory Disease, 2009; 6(3): 133-40
Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. Journal of Pain & Symptom Management, 2008; 36 (5): 451-460
Dorman S, Jolley C, Abernethy A, Currow D, Johnson M, Farquhar M, Griffiths G, Peel T, Moosavi S, Byrne A, Wilcock A, Alloway L, Bausewein C, Higginson I, Booth S. Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup. Palliat Med. 2009 Apr; 23(3): 213-27. (Epub 2009 Feb 27).
Farquhar MC, Higginson IJ, Fagan P, Booth S. The feasibility of a single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease. BMC Palliat Care. 2009 Jul 7; 8(1):9 [Epub ahead of print]
Farquhar M, Higginson IJ, Booth S. Fast-track trials in palliative care: an alternative randomized controlled trial design. J Palliat Med. 2009 Mar; 12(3):213.
Magnussen H, Heigener DF, Bausewein C, Thomas M, Eschbach C, Schütte W, Blankenburg T, Steins M, Bischoff H, Schucher B, Rosseau S, Schütz A, Geiseler J, Kampf S, Karg O. [Palliative care in respiratory medicine] Pneumologie. 2009 May; 63(5):289-95. (Epub 2009 May 5). German.
Rocker G, Horton R, Currow DC, Goodridge D, Young J, Booth S. Palliation of Dyspnea in Advanced Chronic Obstructive Pulmonary Disease: Revisiting A Role For Opioids.(in press) Thorax
Shipman C, White S, Gysels M, White P. Access to care in advanced COPD: factors that influence contact with general practice services. Prim Care Respir J. 2009 Mar 31. pii: pcrj-2008-06-0065. doi: 10.4104/pcrj.2009.00013. [Epub ahead of print]
Sitte T, Bausewein C. Intranasal fentanyl for episodic breathlessness. J Pain Symptom Manage. 2008 Dec; 36(6):e3-6. (Epub 2008 Oct 26).
Articles submitted
Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. Breathlessness trajectories in advanced cancer and COPD: results from a longitudinal study. Submitted to BMJ
Abernethy AP, McDonald CF. Frith PA, Clark K, Herndon JE, Marcello J, Young IH, Bull J, Wilcock A, Booth S, Wheeler JL, Tulsky JA, Crockett AJ, Currow DC Palliative oxygen or medical ambient air for the relief of refractory Dyspnoea.
Simon ST, Bausewein C, Booth S, Harding R, Higginson IJ. Benzodiazepines for the relief of breathlessness in malignant and advanced non-malignant diseases in adults. Submitted to the Cochrane Collaboration
Bausewein C, Booth S, Gysels M, Kühnbach R, Haberland B, Higginson IJ. A comparison of symptoms and palliative care needs in COPD and cancer: a cross-sectional survey. Submitted to American Journal of Respiratory and Critical Care Medicine.
Galbraith S, Fagan P, Perkins P, Lynch A, Booth S. Does the use of a hand-held fan improve chronic dyspnoea: a randomized controlled cross-over trial. Submitted to Journal of Pain and Symptom Management in press.
Gysels M, Higginson IJ. Wives providing home care for husbands with a long-term illness: their role expectations and the consequent needs for support. Submitted to Family Practice.
Gysels M, Higginson IJ. The experience of breathlessness: the social course of COPD. Submitted to Journal of Pain and Symptom Management.
Gysels M, Higginson IJ. Reconciling employment with caring for a husband with an advanced illness. Submitted to BMC Health Services Research.
Farquhar M,Ewing G, Higginson IJ, Booth S. The experience of using the SEIQoL-DW with patients with advanced chronic obstructive pulmonary disease (COPD): issues of process and outcome. Submitted to Quality of Life Research.
Farquhar MC, Higginson IJ, Fagan P, Booth S. Results of a pilot investigation into a complex intervention for breathlessness in advanced chronic obstructive pulmonary disease (COPD): brief report. Submitted to Journal of Palliative Medicine.
A further review - ‘Sleep measures in patients with advanced disease: a systematic review'. The systematic review has been written. The authors are now updating the search for the year 2008 and 2009 to ensure no new publications have appeared since the last search and will then be submitting it for publication.
Other dissemination
Book chapters
Malik F. ‘Sleep Disturbances' chapter in Oxford Handbook of Palliative Care 2nd Edition. OUP Eds Watson M, Lucas C, Hoy A, Wells J
Murtagh FEM, Preston M, Bausewein C. "End-of-life care", in Managing Chronic Obstructive Pulmonary Disease. Blackler L, Jones C, Mooney C (eds), Wiley & Sons, London 2008. Pp 219-236
Presentations at conferences
Presentation to the Palliative Care Congress, University of Glasgow, 29th April-1st May 2008.
. Malik, F. Sleep measures in patients with advanced disease: a systematic review (oral paper).
. Farquhar M, Higginson IJ, Booth S. "Repeated measurement of quality of life in palliative care research: the experience of using the SEIQoL-DW in a pilot phase II RCT of a complex intervention for breathlessness" (oral paper).
Presentations of the 5th Research Forum of the European Association of Palliative Care conference (EAPC), 25-27th May 2008.
. Bausewein, C. Higginson I.J. Choosing a placebo. (Oral presentation)
. Bausewein C, Kühnbach R, Booth S, Gysels M, Higginson IJ. Recruitment and follow-up in a longitudinal study contrasting COPD and cancer. (poster)
. Bausewein C, Booth S, Gysels M, Higginson IJ. Dilemma of RCTs in palliative care: evaluating a hand-held for relief breathlessness. (poster)
. Farquhar M, Booth, S, Higginson IJ. "Referring to a complex intervention for breathlessness, the ‘Breathlessness Intervention Service' (BIS): expectations and experiences of referrers of COPD patients" (poster).
. Gysels M, Higginson IJ. Beyond adherence: self-management for breathlessness in COPD. (Oral presentation).
. Gysels M, Shipman C, White P, Barclay S, Higginson IJ. Does palliative care turn more generalist under current UK policy reforms? (poster presentation)
. Gysels M, Shipman C, White P, Barclay S, Lorenz K, Higginson IJ. Generalist services for adults at the end of life: scoping the literature (poster presentation)
Presentations of the 11th Cogress of the European Association of Palliative Care (EAPC), 2009, Vienna/ Austria.
. Gysels M., Higginson I.J. Wives providing home care for husbands with a long/term illness: role expectations and needs for support (Oral presentation).
. Malik FA, Gysels M, Higginson IJ. "I can see it in her face when her breathings really bad": Living with breathlessness: The experiences of caregivers. (Poster presentation)
. Malik FA, Gysels M, Higginson IJ. Living with breathlessness, how does it affect the sleep patterns of patients & their main caregivers. (Poster presentation)
PRISMA session: Culture in end of life research (organised by Gysels M)
. A call for expertise for the development of a European network of experts on culture and end of life care (presenter: Marjolein Gysels)
. What does culture mean? An analysis of the role of culture in Spanish end-of-life care literature (presenter: Arantza Menaca)
. Making Culture Relevant to End of Life Practice: An Overview of Approaches to Cultural Competency (presenter: Natalie Evans)
. The experience and expression of pain: the influence of culture and ethnicity and implications for palliative care (presenter: Jonathan Koffman)
. Reflections and critical notes on culture (presenter Robert Pool)
Presentations at other conferences
Malik FA, Gysels M, Higginson IJ. Breathlessness in patients with advanced disease: effects on caregivers. Poster presentation at Cancer Division PhD Studies Day Jun 2009
Farquhar M, Booth S, Fagan P, Higginson IJ. Developing a breathlessness intervention service using the MRC framework for the development and evaluation of complex interventions? (poster - shortlisted for prize) Royal College of Nursing (RCN) Eastern Region Research Society Poster Forum, Addenbrooke's NHS Trust, 24th January 2008.
Booth S, Farquhar M, Fagan P, Higginson IJ. "Developing a breathlessness intervention service using the MRC framework for the development and evaluation of complex interventions" (invited poster) Research Professionals Workshop, William Harvey Lecture Theatre, Addenbrooke's NHS Trust, 20th March 2008.
Fagan P, Farquhar M, Booth S. "Managing chronic breathlessness and the Addenbrooke's Breathlessness Intervention Service" (invited speakers). 19th Norfolk Palliative Care Conference. Norwich, 15th April 2008.
Fagan P, Farquhar M, Booth S. Addenbrooke's Breathlessness Intervention Service (invited speakers). The Chartered Society of Physiotherapy Annual Congress, Manchester Central Convention Centre, 17th - 18th October 2008.
Farquhar M, Fagan P, Higginson IJ, Booth S "Evaluatinga complex intervention for patients with advanced disease: the Addenbrooke's Breathlessness Intervention Service" (invited speaker). Royal College of Nursing (RCN) Eastern Region Research Society Meeting, 14th January 2009.
Farquhar M, Booth, S, Higginson IJ. "Referring to a complex intervention for breathlessness, the ‘Breathlessness Intervention Service' (BIS): expectations and experiences of referrers of COPD patients" (poster). Royal College of Nursing (RCN) Eastern Region Research Society Poster Forum, Addenbrooke's NHS Trust, 28th-29th January 2009.