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The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: A qualitative phase 1 study

Published online by Cambridge University Press:  27 September 2006

SARA BOOTH ,
MORAG FARQUHAR ,
MARJOLEIN GYSELS ,
CLAUDIA BAUSEWEIN  and
IRENE J. HIGGINSON
SARA BOOTH
Affiliation:
Addenbrooke's Hospital, Hills Road, Cambridge, UK
MORAG FARQUHAR
Affiliation:
Department of Palliative Care, Policy & Rehabilitation, King's College, London, UK
MARJOLEIN GYSELS
Affiliation:
Department of Palliative Care, Policy & Rehabilitation, King's College, London, UK
CLAUDIA BAUSEWEIN
Affiliation:
Department of Palliative Care, Policy & Rehabilitation, King's College, London, UK
IRENE J. HIGGINSON
Affiliation:
Department of Palliative Care, Policy & Rehabilitation, King's College, London, UK
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Abstract

Objective: Disabling breathlessness is the most common symptom of advanced cardiopulmonary disease. It is usually intractable, even when patients receive maximal medical therapy for their underlying condition. A pilot study was undertaken to evaluate a newly formed palliative Breathlessness Intervention Service (BIS).

Methods: The methodology followed the Medical Research Council's Framework for the Evaluation of Complex Interventions (Phase I). Qualitative interviews were completed with patients and relatives who had used the service and clinicians who had referred to it. The focus of the interviews was the participants' experience of using BIS.

Results: Patients valued the positive educational approach taken to breathlessness, emphasizing what was possible rather than what had been lost. Non-pharmacological strategies, especially the hand-held fan and exercises, were rated very helpful and new to patients. Participants reiterated that breathlessness was frightening and isolating, exacerbating the disability it caused: the easy access to advice and flexibility of BIS helped to alleviate this. Participants wanted a written record of the advice given. Carers welcomed the focus on their needs. Clinicians valued sharing the management of patients with an intractable problem.

Significance of results: This Phase I study has helped to remodel the service rapidly by uncovering the aspects of BIS that users find most valuable and areas that need change or improvement. The BIS needs to provide written information, to reinforce and extend contacts with other agencies to build on support it already provides for patients and carers, and extend its flexibility and accessibility. Providing a “drop-in” service and continuing education after the initial program of contacts is completed could be a useful service development, warranting further evaluation. A qualitative methodology involving service users and referrers can help to shape service development rapidly.

Keywords

Breathlessness serviceIntractable breathlessnessQualitative evaluationPalliativeRehabilitation approach
Type
Research Article
Information
Palliative & Supportive Care , Volume 4 , Issue 3 , September 2006 , pp. 287 - 293
Copyright
© 2006 Cambridge University Press

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References

REFERENCES

Barlow, J.H., Wright, C.C., Turner, A.P., et al. (2005). A 12 month follow up study of self-management training for people with chronic disease: Are changes maintained over time? British Journal of Health Psychology, 10, 589–599.Google Scholar
Baylis, N., Huppert, F.A., & Keverne, B. (2005). The Science of Well-Being. Oxford: Oxford University Press.
Bisschop, M.I., Kriegsman, D.M., Beekman, A.T., et al. (2004). Chronic diseases and depression: The modifying role of psychosocial resources. Social Science and Medicine, 59, 721–733.Google Scholar
Booth, S., Silvester, S., & Todd, C. (2003). Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers. Palliative and Supportive Care, 1, 337–344.Google Scholar
Bredin, M., Corner, J., Krishnasamy, M., et al. (1999). Multi-centre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. British Medical Journal, 318, 901–904.Google Scholar
Cohen, S.R., Mount, B.M., Strobel, M.G., et al. (1995). The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliative Medicine, 9, 207–219.Google Scholar
Corner, J., Plant, H., A'hern, R., et al. (1996). Non-pharmacological intervention for breathlessness in lung cancer. Palliative Medicine, 10, 299–305.Google Scholar
Edmonds, P., Karlsen, S., Khan, S., et al. (2001). A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliative Medicine, 15, 287–295.Google Scholar
Harding, R. & Higginson, I. (2003). What is the best way to help care givers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 1, 63–74.Google Scholar
Hately, J., Laurence, V., & Scott, A. (2003). Breathlessness clinics within specialist palliative care settings can improve the quality of life and functional capacity of patients with lung cancer. Palliative Medicine, 17, 410–417.Google Scholar
Lemstra, M. & Olszynski, W.P. (2005). The effectiveness of multidisciplinary rehabilitation in the treatment of fibromyalgia: A randomized controlled trial. Clinical Journal of Pain, 21, 166–174.Google Scholar
Medical Research Council (2000). A framework for development and evaluation of RCTs for complex interventions to improve health. MRC, London.
Roberts, D.K., Thorne, S., & Pearson, C. (1993). The experience of dyspnea in late-stage cancer. Cancer Nursing, 16, 310–320.Google Scholar
Schwartzstein, R.M., Lahive, K., Pope, A., et al. (1987). Cold facial stimulation reduces breathlessness induced in normal subjects. American Review of Respiratory Diseases, 136, 58–61.Google Scholar