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Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers

Published online by Cambridge University Press:  01 December 2003

SARA BOOTH, ,
STELLA SILVESTER,  and
CHRISTOPHER TODD
SARA BOOTH,
Affiliation:
Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge, UK
STELLA SILVESTER,
Affiliation:
Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge, UK Present address: London School of Hygiene and Tropical Medicine, London, UK
CHRISTOPHER TODD
Affiliation:
Health Services Research, University of Cambridge, Cambridge, UK Present address: School of Nursing, Midwifery and Health Visiting and University of Manchester, Manchester, UK
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Abstract

Objective: To investigate and document the effects of breathlessness on the everyday lives of patients with cancer and COPD and their carers. This subject has been little researched, although dyspnoea is recognized as a disabling, distressing symptom. The number of breathless people is increasing as patients with all types of cardio-respiratory disease live longer.

Methods: Patients with severe COPD and cancer and their carers were interviewed at home using a semistructured format to record their perceptions of the impact of breathlessness, the help they had received from medical and caring services, and their ideas on how these could be improved.

Results: 10 patients with COPD (6 male) and 10 with cancer (6 male) and their spouses were interviewed. All patients found breathlessness frightening, disabling, and restricting. Patients developed a stoical, philosophical approach in order to live with dyspnoea and the difficulties it imposed: this was also an important way of reducing the emotional impact of breathlessness. Patients' spouses suffered significantly, experiencing severe anxiety and helplessness as they witnessed their partners' suffering and felt powerless to reduce it. The restrictions imposed by breathlessness affected their lives profoundly. Support of all kinds, practical, medical, and psychosocial was highly valued but was provided inconsistently and sporadically. Where help was given it came most frequently from general practitioners (GPs, family physicians) and specialist respiratory nurses.

Significance of results: This study is the first to document the psychosocial needs of carers, which are not adequately recognized or addressed at present. Patients and carers may feel most isolated and need support outside the working hours of most services and future provision needs to reflect this. Patients with cancer experience a more rapid onset of breathlessness. More clinicians need to be educated in the management of chronic breathlessness so known helpful strategies are more widely employed.

Keywords

BreathlessnessLung cancerCOPDCarers
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 4 , December 2003 , pp. 337 - 344
Copyright
© 2003 Cambridge University Press

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References

REFERENCES

Bailey, C. (1996). Nursing as therapy in the management of breathlessness in lung cancer. European Journal of Cancer Care, 4, 184–190.Google Scholar
Banzett, R.B. & Moosavi, S.H. (2001). Dyspnea and pain: Similarities and contrasts between two very unpleasant sensations. APS Bulletin, 11, 1–6.Google Scholar
Birks, C. (1997). Pathophysiology and management of dyspnoea in palliative care and the evolving role of the nurse. International Journal of Palliative Nursing, 3, 264–274.Google Scholar
Booth, S. (2001). The Shuttle Walking Test: A reproducible method for evaluating functional capacity in people with advanced cancer. Thorax, 56, 146–150.Google Scholar
Bredin, M., Corner, & J., 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
Carrieri, V.K., Janson-Bjerklie, & S., et al. (1984). The sensation of dyspnoea: A review. Heart and Lung, 13, 436–447.Google Scholar
Desbiens, N.A., Mueller-Rizner, & N., et al. (1999). The symptom burden of seriously ill hospitalized patients. Journal of Pain and Symptom Management, 17, 248–255.Google Scholar
Dudgeon, D.J. & Lertzman, M. (1998). Dyspnea in the advanced cancer patient. Journal of Pain and Symptom Management, 16, 212–219.Google Scholar
Edmonds, P. & Karlsen, S. (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
Hately, J., Laurence, & V., et al. (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
Heaven, C.M. & Maguire, P. (1997). Disclosure of concerns by hospice patients and their identification by nurses. Palliative Medicine, 11, 283–290.Google Scholar
Herzlich, C. (1973). Health and Illness: A Social Psychological Analysis. London: Academic Press.
Higginson, I. & McCarthy, M. (1989). Measuring symptoms in terminal cancer: Are pain and dyspnea controlled? Journal of the Royal Society of Medicine, 82, 264–267.Google Scholar
Janson-Bjerklie, S., Kohlman Carrieri, & V., et al. (1986). The sensations of pulmonary dyspnoea. Nursing Research, 35, 154–159.Google Scholar
Lacasse, Y., Brosseau, & L., et al. (2003). Review: Respiratory rehabilitation improves health-related quality of life in chronic obstructive pulmonary disease. ACP Journal Club, 138, 43.Google Scholar
Leidy, N.K. & Hasse, J.E. (1996). Functional performance in people with chronic obstructive pulmonary disease: A qualitative analysis. Advanced Nursing Science, 18, 77–89.Google Scholar
Mercadante, S., Casuccio, & A., et al. (2000). The course of symptom frequency and intensity in advanced cancer patients followed at home. Journal of Pain and Symptom Management, 20, 104–112.Google Scholar
Muers, M.F. & Round, C.E. (1993). Palliation of symptoms in non-small cell lung cancer: A study by the Yorkshire Regional Cancer Organisation Thoracic Group. Thorax, 48, 339–343.Google Scholar
Nekolaichuk, C., Breura, & E., et al. (1999). A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliative Medicine, 13, 311–323.Google Scholar
O'Driscoll, M., Corner, & J., et al. (1999). The experience of breathlessness in lung cancer. European Journal of Cancer Care, 8, 37–43.Google Scholar
QSR NUDIST. (1997). London: Sage Publications Software.
Reuben, D.B. & Mor, V. (1986). Dyspnea in terminally ill cancer patients. Chest, 89, 234–236.Google Scholar
Robert, D.K., Thorn, S., & Pearson, C. (1993). The experience of dyspnea in late-stage cancer. Cancer Nursing, 16, 310–332.Google Scholar
Rogers, A.E., Addington-Hall, & M., et al. (2000). Knowledge and communication difficulties for patients with chronic heart failure: Qualitative study. British Medical Journal, 321, 605–607.Google Scholar
Rogers, M. & Todd, C. (2002). Information exchange in oncology outpatient clinics: Source, valence and uncertainty. Psycho-Oncology, 11, 336–345.Google Scholar
Saunders, C.M. (1967). The Management of Terminal Illness. London: Hospital Medication Publications.
Steinhauser, K.E., Clipp, & E.C., et al. (2000). In search of a good death: Observations of patients, families and providers. Annals of Internal Medicine, 132, 825–832.Google Scholar
Wilcock, A. et al. (2002). Description of breathlessness in patients with cancer and other cardiorespiratory diseases. Journal of Pain and Symptom Management, 23, 182–189.Google Scholar
Williams, S. (1993). Chronic Respiratory Illness. London: Routledge.