Skip to main content Accessibility help

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

  • SARA BOOTH, (a1), STELLA SILVESTER, (a1) (a2) and CHRISTOPHER TODD (a3) (a4)


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.


Corresponding author

Corresponding author: Dr. Sara Booth, MBBS, Box 193, Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge CB2 2QQ, UK. E-mail:


Hide All


Bailey, C. (1996). Nursing as therapy in the management of breathlessness in lung cancer. European Journal of Cancer Care, 4, 184190.
Banzett, R.B. & Moosavi, S.H. (2001). Dyspnea and pain: Similarities and contrasts between two very unpleasant sensations. APS Bulletin, 11, 16.
Birks, C. (1997). Pathophysiology and management of dyspnoea in palliative care and the evolving role of the nurse. International Journal of Palliative Nursing, 3, 264274.
Booth, S. (2001). The Shuttle Walking Test: A reproducible method for evaluating functional capacity in people with advanced cancer. Thorax, 56, 146150.
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, 901904.
Carrieri, V.K., Janson-Bjerklie, & S., et al. (1984). The sensation of dyspnoea: A review. Heart and Lung, 13, 436447.
Desbiens, N.A., Mueller-Rizner, & N., et al. (1999). The symptom burden of seriously ill hospitalized patients. Journal of Pain and Symptom Management, 17, 248255.
Dudgeon, D.J. & Lertzman, M. (1998). Dyspnea in the advanced cancer patient. Journal of Pain and Symptom Management, 16, 212219.
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, 287295.
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, 410417.
Heaven, C.M. & Maguire, P. (1997). Disclosure of concerns by hospice patients and their identification by nurses. Palliative Medicine, 11, 283290.
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, 264267.
Janson-Bjerklie, S., Kohlman Carrieri, & V., et al. (1986). The sensations of pulmonary dyspnoea. Nursing Research, 35, 154159.
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.
Leidy, N.K. & Hasse, J.E. (1996). Functional performance in people with chronic obstructive pulmonary disease: A qualitative analysis. Advanced Nursing Science, 18, 7789.
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, 104112.
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, 339343.
Nekolaichuk, C., Breura, & E., et al. (1999). A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliative Medicine, 13, 311323.
O'Driscoll, M., Corner, & J., et al. (1999). The experience of breathlessness in lung cancer. European Journal of Cancer Care, 8, 3743.
QSR NUDIST. (1997). London: Sage Publications Software.
Reuben, D.B. & Mor, V. (1986). Dyspnea in terminally ill cancer patients. Chest, 89, 234236.
Robert, D.K., Thorn, S., & Pearson, C. (1993). The experience of dyspnea in late-stage cancer. Cancer Nursing, 16, 310332.
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, 605607.
Rogers, M. & Todd, C. (2002). Information exchange in oncology outpatient clinics: Source, valence and uncertainty. Psycho-Oncology, 11, 336345.
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, 825832.
Wilcock, A. et al. (2002). Description of breathlessness in patients with cancer and other cardiorespiratory diseases. Journal of Pain and Symptom Management, 23, 182189.
Williams, S. (1993). Chronic Respiratory Illness. London: Routledge.


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

  • SARA BOOTH, (a1), STELLA SILVESTER, (a1) (a2) and CHRISTOPHER TODD (a3) (a4)


Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed