Journal of Pain and Symptom Management
Volume 36, Issue 5 , Pages 451-460 , November 2008

Access to Services for Patients with Chronic Obstructive Pulmonary Disease: The Invisibility of Breathlessness

  • Marjolein Gysels, PhD, MA, BA

      Affiliations

    • King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, London, United Kingdom
    • Barcelona Centre for International Health (CRESIB), Barcelona, Spain
    • Corresponding Author InformationAddress correspondence to: Marjolein Gysels, PhD, MA, BA, King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, Weston Education Centre, Cutcombe Road, London SE5 9RJ, United Kingdom.
    • ,
  • Irene J. Higginson, BMedSci, BMBS, FFPHM, PhD, FRCP

      Affiliations

    • King's College London, Department of Palliative Care, Policy and Rehabilitation, School of Medicine, London, United Kingdom

,Accepted 23 November 2007.

References 

  1. Murray CJ, Lopez AD. Alternative projections of mortality and disability by cause 1990–2020: Global Burden of Disease study. Lancet. 1997;349:1498–1504
  2. Pauwels RA, Buist AS, Calverley CR, Hurd SS. on behalf of the GOLD Scientific Committee. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. NHLBI/WHO Workshop Summary. Am J Respir Crit Care Med. 2001;163:1256–1276
  3. American Thoracic Society . Dyspnea: mechanisms, assessment and management: a consensus statement. Am J Respir Crit Care Med. 1999;159:321–340
  4. Bailey PH. The dyspnea-anxiety-dyspnea cycle—COPD patients' stories of breathlessness: “It's scary /when you can't breathe”. Qual Health Res. 2004;14(6):760–778
  5. Barnett M. Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences. J Clin Nurs. 2005;14:805–812
  6. Nicholls DA. The experience of breathlessness. Physiother Theory Pract. 2003;19:123–136
  7. Higginson I, McCarthy M. Measuring symptoms in terminal cancer: are pain and dyspnoea controlled?. J R Soc Med. 1989;82:264–267
  8. Elkington H, White P, Addington-Hall JM, et al. The last year of life of COPD: a qualitative study of symptoms and services. Respir Med. 2004;98:439–445
  9. Oliver SM. Living with failing lungs: the doctor–patient relationship. Fam Pract. 2001;18:430–439
  10. White PT, Elkington H, Addington-Hall JM, Higgs R, Pettinari C. The health and social service needs of chronic obstructive pulmonary disease (COPD) patients in the last year of life. Report to the Directorate of Health and Social Care (DHSC), London: King's College London; 2003;
  11. Skilbeck J, Mott L, Page HSD, Hjelmeland-Ahmedzai S, Clarck D. Palliative care in chronic obstructive airways disease; a needs assessment. Palliat Med. 1998;12:245–254
  12. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000;55(12):1000–1006
  13. Claessens MT, Lynn J, Zhong Z, et al. Dying with lung cancer or chronic obstructive lung disease: insights from SUPPORT. J Am Geriatr Soc. 2000;48(5 Suppl):S146–S153
  14. Rabe KF, Anzueto A, Barnes PJ, et al. Global strategy for diagnosis, management and prevention of COPD. GOLD Executive Summary. Am J Respir Crit Care Med. 2007;176:532–555
  15. Strauss AL, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. Newbury Park, CA: Sage; 1990;
  16. Williams SJ. Chronic respiratory illness and disability: a critical review of the psychosocial literature. Soc Sci Med. 1989;28(8):791–803
  17. Mahler DA, Rosiello RA, Harver A, Lentine T, McGovern JF. Comparison of clinical dyspnoea ratings and psychophysical measurements of respiratory sensation in obstructive airways disease. Am Rev Respir Dis. 1987;135:1229–1233
  18. Wolcove N, Dajezman E, Calacone A, Kreisman K. The relationship between pulmonary function and dyspnoea in obstructive lung disease. Chest. 1989;16(6):1247–1251
  19. Roberts D, Thorne SE, Pearson C. The experience of dyspnoea in late-stage cancer: patients' and nurses' perspectives. Cancer Nurs. 1993;16:310–320
  20. Booth S, Silvester S, Todd C. Breathlessness in cancer and chronic obstructive pulmonary disease: using a qualitative approach to describe the experience of patients and carers. Palliat Support Care. 2003;1:337–344
  21. Edmonds P, Karlsen S, Khan S, Addington-Hall JM. A comparison of the palliative care needs of patients dying from chronic respiratory disease and lung cancer. Palliat Med. 2001;15:287–295
  22. Dudgeon DJ, Rosenthal S. Management of dyspnea and cough in patients with cancer. Hematol Oncol Clin North Am. 1996;10:157–171
  23. Bredin M, Corner J, Krishnasamy M, et al. Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. Br Med J. 1999;318:901–904
  24. Corner J, Plant H, A'Hern R, Bailey C. Non-pharmacological intervention for breathlessness in lung cancer. Palliat Med. 1996;10:299–305
  25. Davis CL. Breathlessness, cough, and other respiratory problems. BMJ. 1997;315:931–934
  26. Saunders CM. The management of terminal illness. London: Hospital Medication Publications; 1967;
  27. National Institute for Clinical Excellence . Supportive and palliative care for people with cancer. London: NICE; 2004;

 The authors thank the Cicely Saunders Foundation whose funding made this research possible.Both authors declare that they have no conflict of interest.

PII: S0885-3924(08)00204-2

doi: 10.1016/j.jpainsymman.2007.11.008

Journal of Pain and Symptom Management
Volume 36, Issue 5 , Pages 451-460 , November 2008

Article Tools