Title: A Palliative Care Approach for breathlessness in lung cancer
1 A Palliative Care Approach for breathlessness in lung cancer
A clinical evaluation
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
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?
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
Clinicians Physiotherapist and key worker (specialist palliative care nurse)
Patient seen 3 times over a period of 4/6 weeks
Assessment tools/outcome measures
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
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)
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 nurses who have been looking after you?
(Maguire and Howell 1995)
9 Clinician Assessment tools
Current respiratory symptoms (MRC respiratory symptom questionnaire and dyspnoea scale)
Functional capacity scale
Sputum production scale
10 Patient assessment tools
Rotterdam symptom checklist
Activity questionnaire
Things which improve breathlessness
Quality of life questionnaire
Breathlessness visual analogue scale
11 Evaluation results
Patient demographics
Respiratory function
Functional capacity
Symptom assessment
Degree of breathlessness
Strategies which improve breathlessness
Quality of life
12 Patient numbers
68 patients referred
45 entered
30 assessed
15 died or deteriorated before completion
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
14 Medication 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
16 (No Transcript) 17 Respiratory symptoms results
Significant improvement (plt0.001)
At baseline 27 were breathless most of the time compared to 3 at completion
19 patients improved
9 remained stable
2 deteriorated
18 Functional capacity
Climb hills or stairs without breathlessness
Walks any distance on the flat without breathlessness
Walks gt 100 yards without breathlessness
Breathlessness on walking lt 100 yards
Breathlessness on mild exertion
Breathlessness at rest
19 (No Transcript) 20 Functional capacity results
Improved (plt0.001)
At baseline only 37 could walk more than 100 yards compared to 77 at completion
21 patients improved
7 remained stable
2 deteriorated
21 (No Transcript) 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
23 (No Transcript) 24 Physical symptom distress score results
Improved (p0.01)
20 patients improved
2 remained the same
8 deteriorated
25 Psychological symptom distress score results
Borderline improvement (p0.06)
18 patients improved
4 remained the same
8 deteriorated
26 Activity level score results
Improved (plt0.001)
24 patients improved
3 remained the same
3 deteriorated
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
28 (No Transcript) 29 Breathlessness at best results
Improved (p0.001)
16 patients improved
12 remained the same
2 deteriorated
30 Breathlessness at worst results
Improved (plt0.001)
27 patients improved
3 remained the same
31 Distress caused by breathlessness results
Improved (plt0.001)
26 patients improved
1 remained the same
3 deteriorated
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
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
34 (No Transcript) 35 (No Transcript) 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
37 Patient satisfaction results
57 of patients breathless gt 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
38 Summary of results
Frequency of dyspnoeaImproved
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)
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)
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
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