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

Author: C A Belchamber - April 2002

A Palliative Care Approach for breathlessness in lung cancer

A clinical evaluationA clinical evaluation


Background to evaluation

Anecdotal evidence in day care – good Anecdotal evidence in day care – good resultsresults

Establishment of a formal evaluation in a Establishment of a formal evaluation in a palliative care settingpalliative care setting

Formal study commenced April 1999Formal study commenced April 1999 Aimed to recruit 30 patientsAimed to recruit 30 patients Data collection completed September 2000Data collection completed September 2000 Report published 29Report published 29thth June 2001 June 2001


Aims of the evaluation

The study was designed to answer the following questions;The study was designed to answer the following questions;

1.1. Can breathlessness or the unpleasant awareness of Can breathlessness or the unpleasant awareness of breathlessness in lung cancer patients be significantly breathlessness in lung cancer patients be significantly reduced with the use of a non-pharmacological approach?reduced with the use of a non-pharmacological approach?

2.2. Can this intervention improve quality of life in this client Can this intervention improve quality of life in this client group?group?

3.3. Does this approach have any other significant effect on Does this approach have any other significant effect on symptom control, apart from breathlessness?symptom control, apart from breathlessness?

4.4. Does this approach improve functional ability (and Does this approach improve functional ability (and therefore independence) in this client group?therefore independence) in this client group?


Referral criteria

Inclusion criteriaInclusion criteria Patients with small cell lung cancer, non-small cell lung Patients with small cell lung cancer, non-small cell lung

cancer or mesotheliomacancer or mesothelioma Patients with breathlessness one month or more after Patients with breathlessness one month or more after

completion of active treatmentcompletion of active treatment Chest x-ray within one monthChest x-ray within one month

Exclusion criteriaExclusion criteria Patients undergoing active treatmentPatients undergoing active treatment Diagnosis other than lung cancerDiagnosis other than lung cancer Patients with pleural effusionPatients with pleural effusion


Method

Operational policy establishedOperational policy established Referrers, consultant oncologists; consultant chest Referrers, consultant oncologists; consultant chest

physicians; clinical nurse specialists; physicians; clinical nurse specialists; Physiotherapists; GP’sPhysiotherapists; GP’s

Clinicians; Physiotherapist and key worker Clinicians; Physiotherapist and key worker (specialist palliative care nurse)(specialist palliative care nurse)

Patient seen 3 times over a period of 4/6 weeksPatient seen 3 times over a period of 4/6 weeks Assessment tools/outcome measuresAssessment tools/outcome measures


Content:

Detailed patient breathing assessmentDetailed patient breathing assessment Exploration of patients feelings about their illness Exploration of patients feelings about their illness

and symptomsand symptoms Training in breathing control techniques such as Training in breathing control techniques such as

slow breathing, diaphragmatic breathing and slow breathing, diaphragmatic breathing and relaxation trainingrelaxation training

Advice on managing attacks of breathlessnessAdvice on managing attacks of breathlessness Advice on coping with activities of daily livingAdvice on coping with activities of daily living


Hurdles related to illness and treatment: UncertaintyUncertainty Search for meaningSearch for meaning Contributing to survivalContributing to survival Maintaining self esteemMaintaining self esteem Being open with othersBeing open with others Maintaining contact with othersMaintaining contact with others Obtaining medical supportObtaining medical support Loss of body part or functionLoss of body part or function Radiotherapy or chemotherapyRadiotherapy or chemotherapy(Maguire and Howell 1995)(Maguire and Howell 1995)


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 Have you been able to come up with any explanation as to why you

should have become ill in this way?should have become ill in this way? Have you found there is anything you can do to contribute to your Have you found there is anything you can do to contribute to your

survival?survival? Has having cancer changed in any way how you feel about yourself Has having cancer changed in any way how you feel about yourself

as a person?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 Have you been seeing as much of other people as you did before

your illness?your illness? How do you feel about the level of support you have been receiving How do you feel about the level of support you have been receiving

form the doctors and nursesform the doctors and nurses who have been looking after you?who have been looking after you?

(Maguire and Howell 1995)(Maguire and Howell 1995)


Clinician Assessment tools:

Current respiratory symptoms (MRC Current respiratory symptoms (MRC respiratory symptom questionnaire and respiratory symptom questionnaire and dyspnoea scale)dyspnoea scale)

Functional capacity scaleFunctional capacity scale

Sputum production scaleSputum production scale


Patient assessment tools:

Rotterdam symptom checklistRotterdam symptom checklist Activity questionnaireActivity questionnaire Things which improve breathlessnessThings which improve breathlessness Quality of life questionnaireQuality of life questionnaire Breathlessness visual analogue scaleBreathlessness visual analogue scale


Evaluation results

Patient demographicsPatient demographics Respiratory functionRespiratory function Functional capacityFunctional capacity Symptom assessmentSymptom assessment Degree of breathlessnessDegree of breathlessness Strategies which improve breathlessnessStrategies which improve breathlessness Quality of lifeQuality of life


Patient numbers:

68 patients referred68 patients referred

45 entered45 entered

30 assessed30 assessed

15 died or deteriorated before completion15 died or deteriorated before completion


Patient characteristics:

Age range 35 to 81 yearsAge range 35 to 81 years 24 male; 6 female24 male; 6 female 16 NSCLC; 3 SCLC; 10 mesothelioma16 NSCLC; 3 SCLC; 10 mesothelioma 73% prior RT73% prior RT 27% prior surgery27% prior surgery 10% prior chemotherapy10% prior chemotherapy 10% no active treatment10% no active treatment


Medication

First visitFirst visit Last visitLast visit

SteroidsSteroids 99 1010

OpioidsOpioids 66 66

Non-opioidsNon-opioids 1414 1414

AntibioticsAntibiotics 22 55

BronchodilatorsBronchodilators 1111 1010

Psychotropic Psychotropic 99 99

OxygenOxygen 33 22


Current respiratory symptoms:How often are you breathless?

Most/all the timeMost/all the time Several times a daySeveral times a day Once or twice a weekOnce or twice a week Several times a weekSeveral times a week Once a weekOnce a week Less than once a weekLess than once a week


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Week 0

Week 4

p<0.001


Respiratory symptoms: results

Significant improvement (p<0.001)Significant improvement (p<0.001) At baseline 27% were breathless most of At baseline 27% were breathless most of

the time compared to 3% at completionthe time compared to 3% at completion 19 patients improved19 patients improved 9 remained stable9 remained stable 2 deteriorated2 deteriorated


Functional capacity:

Climb hills or stairs without breathlessnessClimb hills or stairs without breathlessness Walks any distance on the flat without Walks any distance on the flat without

breathlessnessbreathlessness Walks > 100 yards without breathlessnessWalks > 100 yards without breathlessness Breathlessness on walking < 100 yardsBreathlessness on walking < 100 yards Breathlessness on mild exertionBreathlessness on mild exertion Breathlessness at restBreathlessness at rest


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Week 0

Week 4p<0.001


Functional capacity: results

Improved (p<0.001)Improved (p<0.001) At baseline only 37% could walk more than At baseline only 37% could walk more than

100 yards compared to 77% at completion100 yards compared to 77% at completion 21 patients improved21 patients improved 7 remained stable7 remained stable 2 deteriorated2 deteriorated


SputumSputum First visitFirst visit Last visitLast visit

NoneNone 1313 1313

Small amountSmall amount 1111 1313

Moderate/persistentModerate/persistent 55 44

Severe/large amountSevere/large amount 11 00


Changes in symptoms: Rotterdam symptom checklist 36 questions about symptoms in the last week36 questions about symptoms in the last week Includes physical symptoms and psychological Includes physical symptoms and psychological

distressdistress Scored as not at all (1), a little (2), moderately (3) Scored as not at all (1), a little (2), moderately (3)

or very much (4)or very much (4) Separate activity questionnaire (8 items) scoring Separate activity questionnaire (8 items) scoring

1(able to do) to 4 (unable to do)1(able to do) to 4 (unable to do) Low scores desirableLow scores desirable


Sca

le 2

7 (g

oo

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to 1

08 (

po

or)

30

40

50

60

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80

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100

Sca

le 9

(g

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to 3

6 (p

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Week0 Week 4

Sca

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(g

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to 2

8 (p

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Physical p=0.01

Psychological p=0.06

Activity p<0.001


Physical symptom distress score: results Improved (p=0.01)Improved (p=0.01) 20 patients improved20 patients improved 2 remained the same2 remained the same 8 deteriorated8 deteriorated


Psychological symptom distress score: results Borderline improvement (p=0.06)Borderline improvement (p=0.06) 18 patients improved18 patients improved 4 remained the same4 remained the same 8 deteriorated8 deteriorated


Activity level score: results

Improved (p<0.001)Improved (p<0.001) 24 patients improved24 patients improved 3 remained the same3 remained the same 3 deteriorated3 deteriorated


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 scalesVisual analogue scales 0 (none) to 10 (extremely)0 (none) to 10 (extremely) Low scores desirableLow scores desirable


0

1

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3

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7

8

9

10

VAS(Low scores desirable)

0

1

2

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5

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7

8

9

10

Week 0 Week 4 0

1

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8

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Breathlessnessat best

p=0.001

Breathlessnessat worstp<0.001

Distress causedbybreathlessness p<0.001


Breathlessness at best: results

Improved (p=0.001)Improved (p=0.001) 16 patients improved16 patients improved 12 remained the same12 remained the same 2 deteriorated2 deteriorated


Breathlessness at worst: results

Improved (p<0.001)Improved (p<0.001) 27 patients improved27 patients improved 3 remained the same3 remained the same


Distress caused by breathlessness: results Improved (p<0.001)Improved (p<0.001) 26 patients improved26 patients improved 1 remained the same1 remained the same 3 deteriorated3 deteriorated


Identifying strategies which might improve perception of breathlessness

Patients were asked to score 20 strategiesPatients were asked to score 20 strategies Visual analogue scalesVisual analogue scales 1 (not at all helpful) to 10 (extremely helpful)1 (not at all helpful) to 10 (extremely helpful) Physical strategiesPhysical strategies Specific taught breathing techniquesSpecific taught breathing techniques Psychological strategiesPsychological strategies

Significant improvements in 17/20Significant improvements in 17/20


Quality of life

21 questions on QOL in previous week21 questions on QOL in previous week 1 to 10 visual analogue scale1 to 10 visual analogue scale Values high or low dependent on questionValues high or low dependent on question Significant improvements in hours per day Significant improvements in hours per day

lying down, bodily strength and things lying down, bodily strength and things which made patients happywhich made patients happy

Biggest improvements in ability to do as Biggest improvements in ability to do as wanted and overall quality of lifewanted and overall quality of life


Scal

e 1

(Ver

y po

or) t

o 10

(Bes

t pos

sibl

e)

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4

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Quality of life

p=0.004

Week 0 Week 4


Scal

e 1

(No)

to 1

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Able to do what you wanted in least week

p=0.001

Week 0 Week 4


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 frequencyAppointment 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 Were you given enough time to express your needs and

concerns?concerns? Has the treatment been helpful?Has the treatment been helpful? Contact with the clinicContact with the clinic Clinic environmentClinic environment


Patient satisfaction: results

57% of patients breathless > 6 months57% of patients breathless > 6 months 80% seen within 1-2 weeks80% seen within 1-2 weeks Appointments just right for 97%Appointments just right for 97% 100% satisfaction with information, 100% satisfaction with information,

explanation and time givenexplanation and time given 93% chose hospice environment93% chose hospice environment


Summary of results:

Frequency of dyspnoea:ImprovedFrequency of dyspnoea:Improved Degree of breathlessness: improvedDegree of breathlessness: improved Functional capacity: improvedFunctional capacity: improved Physical symptoms and activity levels: improvedPhysical symptoms and activity levels: improved Quality of life: improvedQuality of life: improved Patient satisfaction highPatient satisfaction high Large drop out rate due to deterioration or deathLarge drop out rate due to deterioration or death Sputum production and medication: unchangedSputum production and medication: unchanged

(Hately et al 2001)(Hately et al 2001)


Recommendations:

Working Group for Lung Cancer 1998: Working Group for Lung Cancer 1998: Breathlessness clinics should be an integral Breathlessness clinics should be an integral part of care for all lung cancer patients.part of care for all lung cancer patients.

Referral at onset of symptomReferral at onset of symptom Education and trainingEducation and training Further researchFurther research

(Hately et al 2001)(Hately et al 2001)


Lewis-Manning House:

Breathlessness clinic fully established by September 2000Breathlessness clinic fully established by September 2000 New referral criteriaNew referral criteria Continuing to collect dataContinuing to collect data Funding remains a problemFunding remains a problem Integration of breathlessness clinic philosophy into Day Integration of breathlessness clinic philosophy into Day

carecare Dissemination of information: Breathlessness study Dissemination of information: Breathlessness study

programme held biannually at Lewis-Manning House; programme held biannually at Lewis-Manning House; talks at Bournemouth university and Poole Hospitaltalks at Bournemouth university and Poole Hospital

Evaluation of breathlessness clinic philosophy on other Evaluation of breathlessness clinic philosophy on other cancer patients experiencing breathlessnesscancer patients experiencing breathlessness

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

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