1. Patient experiences of COPD: the impacts of interactions with health professionals Dr Cathy Bulley, Dr Lisa Salisbury, Ms Suzanne Whiteford, Prof Marie Donaghy,Ms Elaine MacKay

2. Chronic Obstructive Pulmonary Disease COPD involves limitation of expiratory airflow  shortness of breath, productive cough  deconditioning cycle, with fear and avoidance of activities  ↓ function, ↓ quality of life  earlier death (Anto et al, 2001) Medline Plus, 2004

3. Extent of the Problem Global prevalence estimate: 9.3/1000 for men; 7.3/1000 for women Expected that in 2020 this will be the third most prominent cause of death (WHO, 1995; Murray & Lopez, 1997) Sub-optimal management  over-reliance on acute care (Wouters, 2003)

4. Supporting Self-Management ↑ emphasis on management of long-term conditions Individuals can learn better ways of coping with COPD Pulmonary rehabilitation aims to maximise function using: (BTS, 2001)  exercise training,  education and  support in symptom control

5. Evidence and Participation There is strong evidence of the efficacy of pulmonary rehabilitation (Lacasse et al, 2006) BUT benefits depend on participation – varies from 40% to 66% (e.g. Young et al, 1999) Minimal research into patterns of participation  Greater understanding of decisions is needed

6. This study… Aim: to explore individuals’ experiences of COPD and its management PRIOR to attending pulmonary rehabilitation Focus of this abstract: The impacts of interactions with health professionals on experiences and views about attending pulmonary rehabilitation

7. Study Design Qualitative; Phenomenological  Interpretative Phenomenological Analysis (IPA) (Conrad, 1987)  Gain understanding of the patient’s perspective through co-construction between the participant and researcher Single semi-structured person-person interview in participant’s home (Grbich, 1999): 50-90 minutes

8. Participants Individuals with COPD accepting referral to Pulmonary Rehabilitation during clinic visit Purposive selection to ensure men and women 10 participants sought, 9 participated (5 men, 4 women) White Caucasians living in Glasgow, aged 59-82 Ethical approval granted (Multi-Centre REC)

9. Analysis Interpretative Phenomenological Analysis framework  Classification of views and experiences (themes)  Interrelationships between themes  QSR N6 package for data management  2 researchers to increase trustworthiness

10. Results: Positive Interactions Positive interactions with health professionals:  Provision of effective advice on coping with symptoms (paramedics, nurses, physiotherapists)  Feelings of faith in health professionals  Positive expectations of further management, including pulmonary rehabilitation

11. Results: Negative Interactions Absence of advice (except about smoking) from medical staff  feelings of being dismissed  perception that specialist management is a waste of time and energy  The burden of pulmonary rehabilitation may > benefit

12. Referral Practices: views about attending pulmonary rehabilitation were more positive when:  Referrers stated how wonderful the results are (non-specific…) views about attending pulmonary rehabilitation were more negative when:  Referrers were vague about content (e.g. – “there’s exercise…”)

13. Follow-up… Information on actual attendance –  Non-attendance due to inappropriate referral (1) poor referral coordination (1) and a clash with another research study (1) and for no stated reason (1)  Non-completion due to infection / co-existing conditions – mobility, depression (2)  Completion despite interruptions due to infection (3)  This made follow-up interviews (6) of limited use

14. Conclusions All our interactions impact on individuals’ beliefs and perceptions regarding management

15. What can we do? Improve referral practices… Ideally:  emphasise that pulmonary rehabilitation aims to increase function and independence  using education and advice,  individually tailored and expertly supervised exercise, and  group support  concerns about attending? At the very least – express enthusiasm!

16. Thank you for your attention! Acknowledgments: School of Health Sciences, Queen Margaret University, Edinburgh Centre for Integrated Healthcare Research, Edinburgh

17. References Anto, J., Vermeire, P., Vestbo, J., & Sunyer, J. (2001). Epidemiology of chronic obstructive pulmonary disease. Eur Respir J, 17, 982-994. British Thoracic Society. (2001). BTS Standards of Care Subcommittee on Pulmonary Rehabilitation. BTS Statement: Pulmonary Rehabilitation. Thorax, 56, 827-834. Conrad, P. (1987). The experience of illness: Recent and new directions. Res Sociol Health Care, 6, 1-31. Grbich, C. (1999). Qualitative research in health: an introduction. London: Sage Publications Ltd. Lacasse, Y., Brousseau, L., Milne, S., et al. (2006). Pulmonary rehabilitation for chronic obstructive pulmonary disease. The Cochrane Database of Systematic Reviews. (Issue 2, Art. No.: CD003793, DOI: 10.1002/14651858, CD003793) Medline Plus (2004) Medical Encyclopedia: Emphysema, National Library of Medicine (NLM). Online at: http://www.nlm.nih.gov/medlineplus/copyright.html [Accessed 19/03/2007].http://www.nlm.nih.gov/medlineplus/copyright.html Murray, C., & Lopez, A. (1997). Alternative projections of mortality and disability by cause 1990-2020: Global burden of disease study. Lancet, 349, 1498-1504. World Health Organisation (WHO). (1995). World Health Statistics Annual. Geneva: WHO. Wouters, E. (2003). Economic analysis of the Confronting COPD survey: an overview of results. Respir Med, 97, S3-S14. Young, P., Dewse, M., Fergusson, W., et al. (1999). Respiratory rehabilitation in chronic pulmonary disease: predictors of nonadherence. Eur Respir J, 13, 855-859.