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A Palliative Care Approach for breathlessness in lung cancer

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

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

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

  4. 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 Author: C A Belchamber - April 2002

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

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

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

  8. Key questions: • 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 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? • 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? • How do you feel about the level of support you have been receiving form the doctors and nurseswho have been looking after you? (Maguire and Howell 1995) Author: C A Belchamber - April 2002

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

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

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

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

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

  14. Medication Author: C A Belchamber - April 2002

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

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  17. Respiratory symptoms: results • Significant improvement (p<0.001) • At baseline 27% were breathless most of the time compared to 3% at completion • 19 patients improved • 9 remained stable • 2 deteriorated Author: C A Belchamber - April 2002

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

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  20. Functional capacity: results • Improved (p<0.001) • At baseline only 37% could walk more than 100 yards compared to 77% at completion • 21 patients improved • 7 remained stable • 2 deteriorated Author: C A Belchamber - April 2002

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  22. Changes in symptoms: Rotterdam symptom checklist • 36 questions about symptoms in the last week • Includes physical symptoms and psychological distress • 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) • Low scores desirable Author: C A Belchamber - April 2002

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  24. Physical symptom distress score: results • Improved (p=0.01) • 20 patients improved • 2 remained the same • 8 deteriorated Author: C A Belchamber - April 2002

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

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

  27. 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 • 0 (none) to 10 (extremely) • Low scores desirable Author: C A Belchamber - April 2002

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  29. Breathlessness at best: results • Improved (p=0.001) • 16 patients improved • 12 remained the same • 2 deteriorated Author: C A Belchamber - April 2002

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

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

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

  33. Quality of life • 21 questions on QOL in previous week • 1 to 10 visual analogue scale • Values high or low dependent on question • 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 Author: C A Belchamber - April 2002

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  36. Patient satisfaction survey: • Who referred you to the clinic? • How long have you been breathless? • Who have you sought help from for your breathlessness? • How long did you wait for your first appointment? • Appointment length and frequency • Were you given enough information and explanation? • Were you given enough time to express your needs and concerns? • Has the treatment been helpful? • Contact with the clinic • Clinic environment Author: C A Belchamber - April 2002

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

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

  39. Recommendations: • 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 • Education and training • Further research (Hately et al 2001) Author: C A Belchamber - April 2002

  40. Lewis-Manning House: • Breathlessness clinic fully established by September 2000 • New referral criteria • Continuing to collect data • Funding remains a problem • 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 • Evaluation of breathlessness clinic philosophy on other cancer patients experiencing breathlessness Author: C A Belchamber - April 2002