1. Author: C A Belchamber - April 2002 A Palliative Care Approach for breathlessness in lung cancer A clinical evaluation

2. Author: C A Belchamber - April 2002 Background to evaluation Anecdotal evidence in day care – good results Anecdotal evidence in day care – good results Establishment of a formal evaluation in a palliative care setting Establishment of a formal evaluation in a palliative care setting Formal study commenced April 1999 Formal study commenced April 1999 Aimed to recruit 30 patients Aimed to recruit 30 patients Data collection completed September 2000 Data collection completed September 2000 Report published 29 th June 2001 Report published 29 th June 2001

3. Author: C A Belchamber - April 2002 Aims of the evaluation The study was designed to answer the following questions; 1. Can breathlessness or the unpleasant awareness of breathlessness in lung cancer patients be significantly reduced with the use of a non-pharmacological approach? 2. Can this intervention improve quality of life in this client group? 3. Does this approach have any other significant effect on symptom control, apart from breathlessness? 4. Does this approach improve functional ability (and therefore independence) in this client group?

4. Author: C A Belchamber - April 2002 Referral criteria Inclusion criteria  Patients with small cell lung cancer, non-small cell lung cancer or mesothelioma  Patients with breathlessness one month or more after completion of active treatment  Chest x-ray within one month Exclusion criteria  Patients undergoing active treatment  Diagnosis other than lung cancer  Patients with pleural effusion

5. Author: C A Belchamber - April 2002 Method Operational policy established Operational policy established Referrers, consultant oncologists; consultant chest physicians; clinical nurse specialists; Physiotherapists; GP’s Referrers, consultant oncologists; consultant chest physicians; clinical nurse specialists; Physiotherapists; GP’s Clinicians; Physiotherapist and key worker (specialist palliative care nurse) Clinicians; Physiotherapist and key worker (specialist palliative care nurse) Patient seen 3 times over a period of 4/6 weeks Patient seen 3 times over a period of 4/6 weeks Assessment tools/outcome measures Assessment tools/outcome measures

6. Author: C A Belchamber - April 2002 Content: Detailed patient breathing assessment Detailed patient breathing assessment Exploration of patients feelings about their illness and symptoms Exploration of patients feelings about their illness and symptoms Training in breathing control techniques such as slow breathing, diaphragmatic breathing and relaxation training Training in breathing control techniques such as slow breathing, diaphragmatic breathing and relaxation training Advice on managing attacks of breathlessness Advice on managing attacks of breathlessness Advice on coping with activities of daily living Advice on coping with activities of daily living

7. Author: C A Belchamber - April 2002 Hurdles related to illness and treatment: Uncertainty Uncertainty Search for meaning Search for meaning Contributing to survival Contributing to survival Maintaining self esteem Maintaining self esteem Being open with others Being open with others Maintaining contact with others Maintaining contact with others Obtaining medical support Obtaining medical support Loss of body part or function Loss of body part or function Radiotherapy or chemotherapy Radiotherapy or chemotherapy (Maguire and Howell 1995)

8. Author: C A Belchamber - April 2002 Key questions: How do you see your illness working out? How do you see your illness working out? Have you been able to come up with any explanation as to why you should have become ill in this way? Have you been able to come up with any explanation as to why you should have become ill in this way? Have you found there is anything you can do to contribute to your survival? Have you found there is anything you can do to contribute to your survival? Has having cancer changed in any way how you feel about yourself as a person? Has having cancer changed in any way how you feel about yourself as a person? Have you been able to be open with others abut having cancer? Have you been able to be open with others abut having cancer? Have you been seeing as much of other people as you did before your illness? Have you been seeing as much of other people as you did before your illness? How do you feel about the level of support you have been receiving form the doctors and nurses who have been looking after you? How do you feel about the level of support you have been receiving form the doctors and nurses who have been looking after you? (Maguire and Howell 1995)

9. Author: C A Belchamber - April 2002 Clinician Assessment tools: Current respiratory symptoms (MRC respiratory symptom questionnaire and dyspnoea scale) Current respiratory symptoms (MRC respiratory symptom questionnaire and dyspnoea scale) Functional capacity scale Functional capacity scale Sputum production scale Sputum production scale

10. Author: C A Belchamber - April 2002 Patient assessment tools: Rotterdam symptom checklist Rotterdam symptom checklist Activity questionnaire Activity questionnaire Things which improve breathlessness Things which improve breathlessness Quality of life questionnaire Quality of life questionnaire Breathlessness visual analogue scale Breathlessness visual analogue scale

11. Author: C A Belchamber - April 2002 Evaluation results Patient demographics Patient demographics Respiratory function Respiratory function Functional capacity Functional capacity Symptom assessment Symptom assessment Degree of breathlessness Degree of breathlessness Strategies which improve breathlessness Strategies which improve breathlessness Quality of life Quality of life

12. Author: C A Belchamber - April 2002 Patient numbers: 68 patients referred 68 patients referred 45 entered 45 entered 30 assessed 30 assessed 15 died or deteriorated before completion 15 died or deteriorated before completion

13. Author: C A Belchamber - April 2002 Patient characteristics: Age range 35 to 81 years Age range 35 to 81 years 24 male; 6 female 24 male; 6 female 16 NSCLC; 3 SCLC; 10 mesothelioma 16 NSCLC; 3 SCLC; 10 mesothelioma 73% prior RT 73% prior RT 27% prior surgery 27% prior surgery 10% prior chemotherapy 10% prior chemotherapy 10% no active treatment 10% no active treatment

14. Author: C A Belchamber - April 2002 Medication First visit Last visit Steroids910 Opioids66 Non-opioids1414 Antibiotics25 Bronchodilators1110 Psychotropic99 Oxygen32

15. Author: C A Belchamber - April 2002 Current respiratory symptoms: How often are you breathless? Most/all the time Most/all the time Several times a day Several times a day Once or twice a week Once or twice a week Several times a week Several times a week Once a week Once a week Less than once a week Less than once a week

16. Author: C A Belchamber - April 2002

17. Respiratory symptoms: results Significant improvement (p<0.001) Significant improvement (p<0.001) At baseline 27% were breathless most of the time compared to 3% at completion At baseline 27% were breathless most of the time compared to 3% at completion 19 patients improved 19 patients improved 9 remained stable 9 remained stable 2 deteriorated 2 deteriorated

18. Author: C A Belchamber - April 2002 Functional capacity: Climb hills or stairs without breathlessness Climb hills or stairs without breathlessness Walks any distance on the flat without breathlessness Walks any distance on the flat without breathlessness Walks > 100 yards without breathlessness Walks > 100 yards without breathlessness Breathlessness on walking < 100 yards Breathlessness on walking < 100 yards Breathlessness on mild exertion Breathlessness on mild exertion Breathlessness at rest Breathlessness at rest

19. Author: C A Belchamber - April 2002

20. Functional capacity: results Improved (p<0.001) Improved (p<0.001) At baseline only 37% could walk more than 100 yards compared to 77% at completion At baseline only 37% could walk more than 100 yards compared to 77% at completion 21 patients improved 21 patients improved 7 remained stable 7 remained stable 2 deteriorated 2 deteriorated

21. Author: C A Belchamber - April 2002 Sputum First visit Last visit None1313 Small amount 1113 Moderate/persistent54 Severe/large amount 10

22. Author: C A Belchamber - April 2002 Changes in symptoms: Rotterdam symptom checklist 36 questions about symptoms in the last week 36 questions about symptoms in the last week Includes physical symptoms and psychological distress Includes physical symptoms and psychological distress Scored as not at all (1), a little (2), moderately (3) or very much (4) Scored as not at all (1), a little (2), moderately (3) or very much (4) Separate activity questionnaire (8 items) scoring 1(able to do) to 4 (unable to do) Separate activity questionnaire (8 items) scoring 1(able to do) to 4 (unable to do) Low scores desirable Low scores desirable

23. Author: C A Belchamber - April 2002

24. Physical symptom distress score: results Improved (p=0.01) Improved (p=0.01) 20 patients improved 20 patients improved 2 remained the same 2 remained the same 8 deteriorated 8 deteriorated

25. Author: C A Belchamber - April 2002 Psychological symptom distress score: results Borderline improvement (p=0.06) Borderline improvement (p=0.06) 18 patients improved 18 patients improved 4 remained the same 4 remained the same 8 deteriorated 8 deteriorated

26. Author: C A Belchamber - April 2002 Activity level score: results Improved (p<0.001) Improved (p<0.001) 24 patients improved 24 patients improved 3 remained the same 3 remained the same 3 deteriorated 3 deteriorated

27. Author: C A Belchamber - April 2002 Degree of breathlessness: How breathless have you felt in the last 24 hours when your breathing has been at its best and at its worst? How much distress has your breathing caused? Visual analogue scales Visual analogue scales 0 (none) to 10 (extremely) 0 (none) to 10 (extremely) Low scores desirable Low scores desirable

28. Author: C A Belchamber - April 2002

29. Breathlessness at best: results Improved (p=0.001) Improved (p=0.001) 16 patients improved 16 patients improved 12 remained the same 12 remained the same 2 deteriorated 2 deteriorated

30. Author: C A Belchamber - April 2002 Breathlessness at worst: results Improved (p<0.001) Improved (p<0.001) 27 patients improved 27 patients improved 3 remained the same 3 remained the same

31. Author: C A Belchamber - April 2002 Distress caused by breathlessness: results Improved (p<0.001) Improved (p<0.001) 26 patients improved 26 patients improved 1 remained the same 1 remained the same 3 deteriorated 3 deteriorated

32. Author: C A Belchamber - April 2002 Identifying strategies which might improve perception of breathlessness Patients were asked to score 20 strategies Patients were asked to score 20 strategies Visual analogue scales Visual analogue scales 1 (not at all helpful) to 10 (extremely helpful) 1 (not at all helpful) to 10 (extremely helpful) Physical strategies Physical strategies Specific taught breathing techniques Specific taught breathing techniques Psychological strategies Psychological strategies Significant improvements in 17/20

33. Author: C A Belchamber - April 2002 Quality of life 21 questions on QOL in previous week 21 questions on QOL in previous week 1 to 10 visual analogue scale 1 to 10 visual analogue scale Values high or low dependent on question Values high or low dependent on question Significant improvements in hours per day lying down, bodily strength and things which made patients happy Significant improvements in hours per day lying down, bodily strength and things which made patients happy Biggest improvements in ability to do as wanted and overall quality of life Biggest improvements in ability to do as wanted and overall quality of life

34. Author: C A Belchamber - April 2002

36. Patient satisfaction survey: Who referred you to the clinic? Who referred you to the clinic? How long have you been breathless? How long have you been breathless? Who have you sought help from for your breathlessness? Who have you sought help from for your breathlessness? How long did you wait for your first appointment? How long did you wait for your first appointment? Appointment length and frequency Appointment length and frequency Were you given enough information and explanation? Were you given enough information and explanation? Were you given enough time to express your needs and concerns? Were you given enough time to express your needs and concerns? Has the treatment been helpful? Has the treatment been helpful? Contact with the clinic Contact with the clinic Clinic environment Clinic environment

37. Author: C A Belchamber - April 2002 Patient satisfaction: results 57% of patients breathless > 6 months 57% of patients breathless > 6 months 80% seen within 1-2 weeks 80% seen within 1-2 weeks Appointments just right for 97% Appointments just right for 97% 100% satisfaction with information, explanation and time given 100% satisfaction with information, explanation and time given 93% chose hospice environment 93% chose hospice environment

38. Author: C A Belchamber - April 2002 Summary of results: Frequency of dyspnoea:Improved Frequency of dyspnoea:Improved Degree of breathlessness: improved Degree of breathlessness: improved Functional capacity: improved Functional capacity: improved Physical symptoms and activity levels: improved Physical symptoms and activity levels: improved Quality of life: improved Quality of life: improved Patient satisfaction high Patient satisfaction high Large drop out rate due to deterioration or death Large drop out rate due to deterioration or death Sputum production and medication: unchanged Sputum production and medication: unchanged (Hately et al 2001)

39. Author: C A Belchamber - April 2002 Recommendations: Working Group for Lung Cancer 1998: Breathlessness clinics should be an integral part of care for all lung cancer patients. Working Group for Lung Cancer 1998: Breathlessness clinics should be an integral part of care for all lung cancer patients. Referral at onset of symptom Referral at onset of symptom Education and training Education and training Further research Further research (Hately et al 2001)

40. Author: C A Belchamber - April 2002 Lewis-Manning House: Breathlessness clinic fully established by September 2000 Breathlessness clinic fully established by September 2000 New referral criteria New referral criteria Continuing to collect data Continuing to collect data Funding remains a problem Funding remains a problem Integration of breathlessness clinic philosophy into Day care Integration of breathlessness clinic philosophy into Day care Dissemination of information: Breathlessness study programme held biannually at Lewis-Manning House; talks at Bournemouth university and Poole Hospital Dissemination of information: Breathlessness study programme held biannually at Lewis-Manning House; talks at Bournemouth university and Poole Hospital Evaluation of breathlessness clinic philosophy on other cancer patients experiencing breathlessness Evaluation of breathlessness clinic philosophy on other cancer patients experiencing breathlessness