Lost in translation bridging the communication gap in COPD - a report by the British Lung Foundation
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Lost in translation cover II amends.qxd 25/08/2006 12:57 Page 1
Lost in translation
bridging the communication gap in COPD
a report by the British Lung Foundation
• 08458 50 50 20
• enquiries@blf-uk.org
• www.lunguk.org 1
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Contents
p.3 Introduction
p.7 Survey results in detail
p.7 Awareness
p.12 Action
p.15 Support
p.18 Conclusions and
recommendations
p.20 How the British Lung
Foundation can help
p.21 Appendix - the landscape
of COPD management
p.24 About the British
Lung Foundation
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Introduction
A recent British Lung Foundation survey reveals that many
people with COPD misunderstand the most basic facts
about their illness, including its name, what caused it and
how it can be managed. The survey shows that there are
communication barriers between healthcare professionals
and people with COPD in most aspects of diagnosis and
treatment and that the substantial emotional and practical
impact of COPD on the lives of patients and their families is
being underestimated by those treating them.
The survey shows that the disease is not being diagnosed,
communicated, or managed well, with the result that many
people with COPD are unaware that their condition will get
progressively worse; that giving up smoking would slow the
progression of the disease; and that there are ways to
increase their day-to-day activity and control their breathing.
The research also shows that there is a huge gap between
doctors' priorities when managing the disease and
patients' priorities when living with it. People with COPD
focus on feeling unwell; on their ability to 'do' and on the
emotional consequences of the disease; doctors
focus on physical functions and measuring clinical
symptoms. Whilst doctors recognise that people with COPD
can be very negative about their condition, they often do
not see low self-esteem as part of their remit.
Finally, the research shows that approximately one in
four people had delayed going to their GP about their
symptoms for as much as 10 years after first noticing them,
betraying a lack of awareness of COPD amongst the
general public and a reluctance to engage with healthcare
professionals about smoking cessation.
Survey methodology
3
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The quantitative survey
consisted of interviews with 100
people with COPD. 57% were
female and 43% male and they
were aged between 41 and 71+.
The survey took place in
Autumn 2005. The qualitative
survey consisted of a group of
people with COPD whose
discussion was viewed by
healthcare professionals,
leading to a general group
discussion with those
healthcare professionals.
Survey findings
The survey identifies three clear
areas where poor communication
with people with COPD can be
addressed. This will help people
with COPD to manage their
condition successfully; and help
their healthcare professionals to
treat them more effectively.
Successful management leads
directly to improved emotional
well being.
The three areas are:
• Awareness: the name, COPD;
what COPD is; its causes; its
progression.
• Action: how people can improve
their life with COPD, through
treatment, lifestyle, outlook.
• Support: what people need
from family and healthcare
professionals, in terms of
understanding, treatment
and help.
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Key findings in these areas
Awareness
• Only 17% of respondents were diagnosed with COPD at their first
• consultation. 30% were told they had asthma; 10% were told they
• had emphysema and 16% were told they had bronchitis. This led
• to confusion about the cause and outcome of their COPD
• On average respondents had received three different labels for
• their disease
• More than one in three (34%) do not understand that their COPD
• will get worse
• Almost a quarter (22%) think that their condition will stay the
• same or improve
• Fewer than half understand that smoking has led to their COPD
• Almost a quarter (23%) had delayed seeing their GP about their
• symptoms for as much as 10 years after first noticing them
Action
• More than a third (37%) of respondents said their GP did not
• explain that stopping smoking would slow the progression of the
• disease; and 43% said they did not offer help with smoking
• cessation now or in the past
• Nearly half (48%) of respondents said their GP had not talked
• about what to do when their symptoms flare up (a key reason
• for worsening COPD, and death)
• Nearly two thirds (63%) of respondents said their GP had not
• discussed ways in which people could increase their day-to-day activity
• 14% of respondents were unaware that maintenance therapy
• could help to improve their long term prognosis
• More than half (57%) said their GP does not give them advice on
• how to control their breathing
• More than a quarter (26%) said their GP does not review their
• medication when they see them
• Nearly a half (45%) said their GP doesn't review the equipment
• they use to manage their condition
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Support
• Over half (52%) of respondents said their GP did not discuss the
• emotional aspects of COPD with them
• Nearly a quarter (24%) thought their doctor/nurse did not
• understand the impact of the disease on their family
• Family members over-compensating can further damage
• self-esteem
The survey points to three areas where improvement will be of
significant benefit to people with COPD both in their emotional and
physical well-being and in their relationships with those who care
for them:
• Early, correct diagnosis of COPD, with doctors/nurses
• providing accurate, relevant and easily understood information
• Clear explanation of key treatments, their importance, function
• and effect: medication; stopping smoking; exercise
• Appropriate and relevant understanding and support for
• people with COPD, delivered by appropriate agencies
• and individuals
It is very clear that the role of primary care is central
to improving the way people with COPD progress
through the management of their disease. The British
Lung Foundation is committed to helping primary care
bring about this improvement.
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Survey results in detail
Awareness
COPD is not the most helpful of names for such a common disease. It
isn't very well known, it's not descriptive, it needs explaining, and
even when it's spelled out in full it can be hard to understand. And
this is as true for some healthcare professionals (HCPs) as it is for the
public in general.
The survey results in this area show confusion and inconsistency
around the diagnosis and explanation of COPD by HCPs. They also
show how broader lack of awareness of COPD might be contributing.
The issue is that this confusion does not help people manage
their COPD.
On average, respondents were given three different labels from their
HCP to describe their disease. This broad range of terminology was
reflected in the terms used by people with COPD to describe their
own symptoms:
COPD 58 27
Emphysema 13 25
Asthma 13 19
Lung disease 27
Bronchitis 5 15 Spontaneous
Shortness of breath/ air 3 Prompted
Breathing difficulties 4
Breathlessness/Breathless 3
0 10 20 30 40 50 60 70 80 90
%of respondents
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This confusion over the name of the disease is compounded by the fact that the
majority of people with COPD are not actually told they have COPD in the first place:
COPD 17 70
Emphysema 10 41
Asthma 30 15
Bronchitis 16 26
Lung disease 27
Don’t know 13 Label at first consultation
Chest infection/ virus 5 Subsequent label
Pneumonia 2
None 1
0 10 20 30 40 50 60 70 80 90 100
% of respondents
Once diagnosis has been made, the confusion does not end. Many people do not
seem to understand the nature of their disease, how they got COPD, or how it is likely
to progress.
Perceptions of COPD:
Total Mild Moderate Mild/Moderate Severe
(n=)100 (n=9) (n=25) (n=34) (n=66)
I understand all I need 60% 44% 60% 56% 62%
to know about my COPD
My smoking has led to 46% 50% 47% 48% 46%
my COPD
I feel I was just unlucky 38% 11% 44% 35% 39%
to get COPD
There is a family history 24% 11% 16% 15% 29%
COPD is just part of 9% 11% 8% 9% 9%
getting old
It is worth highlighting that fewer than half understand that smoking has caused
COPD (which it does in over 90% of all cases. In this survey 70% of respondents were
former smokers 12% were current smokers and 18% were non-smokers).
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Perceptions of how COPD
will progress:
Get a lot worse
Get a bit worse
30 15 4 3 12 Stay the same
36
Improve a bit
Improve a lot
Don’t know
0 20 40 60 80 100
% of respondents
So 34% of respondents either think that their COPD will stay the
same or get better, or they simply do not know what's going to
happen. But COPD never gets better, and will always get worse -
treatment can help to slow the progression of the disease, and the
earlier the diagnosis the better. People with COPD need to know this,
as do HCPs.
A further contributing factor to the general confusion is the wide
variety of reasons why people make the visit to their GP which leads
to their eventual diagnosis with COPD:
Difficulty in breathing 83 14
Wheezing 12 59
Cough 15 54
Excess mucus/phlegm 7 56
Chest pain 15 26 Spontaneous
Chest infection 5 Prompted
Difficulty in walking 4
0 10 20 30 40 50 60 70 80 90 100
%of respondents
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What is more, this visit is often much later than it should be. Almost a
quarter (23%) of respondents had delayed seeing their GP for as
much as ten years after first noticing symptoms.
Their reasons included:
• The symptoms weren't stopping me doing the things I wanted
• to (57%)
• I smoke, so I thought it was due to that (57%)
• I thought it was part of getting older (43%)
• I didn't think there was anything that could be done (26%)
These results indicate a general lack of awareness of COPD and how
early diagnosis helps, but also point to a reluctance among smokers
to engage with their HCP. Results below might show why this is the
case (see the Support section).
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Action
Once people understand that they have COPD, and how it is likely to
develop, they need to know what action they and their HCP can take
to slow the progression of the disease.
This has benefits in physical terms, in that this progression can
be slowed.
And it has obvious emotional benefits: understanding that something
can be done reduces feelings of helplessness and despair.
The NICE guideline on COPD in 2004 identified priorities for the
treatment and diagnosis of COPD. Some of these were reflected in
this survey:
• The importance of stopping smoking
• Medication
• Pulmonary rehabilitation (exercise)
• What to do when COPD flares up
Stopping smoking is the single most important thing a smoker
with COPD can do. If a person with COPD continues to smoke, the
disease will get much worse, much more quickly; it's as simple as that.
In this context, it is worrying that (as we have seen) the majority of
respondents did not know that smoking was the cause of their COPD.
It is even more worrying that 37% of respondents said their GP did
not explain to people that stopping smoking would slow the
progression of the disease; and 43% of respondents said their GP did
not offer help with smoking cessation.
The survey also showed a serious division between smokers and HCPs
over the issue of smoking. Many HCPs showed irritation towards
smokers with COPD who are not able to stop smoking, and said they
found it a barrier to effective treatment.
Medication is central to slowing the progression of COPD, as well
as in managing the symptoms. While the survey showed that most
respondents understood the importance of their medication, this was
less so in those with mild or early COPD. This is worrying, as this is
the group for whom medication can be most effective at slowing
the progression of the disease.
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Total Mild Moderate Mild/ Severe
(n=)100 (n=9) (n=25) Moderate (n=66)
(n=34)
My treatment helps with the 74% 56% 72% 68% 77%
management of my COPD
I am not reliant on my 11% 44% 4% 15% 9%
medication to live a normal life
and only need it once in a while
Pulmonary rehabilitation is a tailored course of gentle exercise
which helps people with COPD to regain a level of fitness. People who
are breathless are often anxious about becoming more breathless
and so do not exert themselves. This makes them less fit and so more
likely to be breathless. This downward spiral can be broken, and it is
very important that it is, for both physical and emotional reasons.
Pulmonary rehabilitation has been shown to have enormous benefits
for people's sense of well-being. Unfortunately, instructions from
healthcare professionals to exercise were misinterpreted by people
with COPD who think that they have to go to the gym instead of go
for a walk.
In the same vein, there are techniques available to people with COPD
which can help control breathing and breathlessness.
So it is disappointing that 63% of respondents said their GP had not
discussed ways of increasing their day to day activity, and 57% of
respondents said their GP had not given them any advice on how to
control breathing.
Flare-ups, or ‘exacerbations,’ are times when COPD gets much
worse. This often results in an emergency hospital admission, and
sometimes in death. A flare-up always worsens the overall state of a
person's COPD. If flare-ups can be avoided, this dramatically
improves their prospects.
People with COPD can take steps to avoid flare-ups by understanding
their symptoms, recognising when a flare-up may be imminent and
acting accordingly. They need help to do this, until they are
knowledgeable enough about their condition.
Our respondents said that fewer than half of GPs discuss flare-ups
with them.
It is interesting to note, though, that 92% of respondents said they
felt their COPD was being "successfully managed". Given the results
detailed above, this response might reflect that they simply have
confidence in their HCP. Indeed, 70% said that their HCP "helps me
a lot with the management of my COPD. This is good news, but
the concern must be that people with COPD are not necessarily
aware of what further treatments could, and should, be made
available to them.
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Support
These are some of the ways in which people with COPD describe the
effect it has on their life:
Total Mild Moderate Mild/Moderate Severe
(n=)100 (n=9) (n=25) (n=34) (n=66)
My COPD slows me down 83% 33% 64% 56% 97%
I have to cut down on 79% 33% 56% 50% 94%
activities (walking,
shopping, playing with the
grandchildren, gardening)
I need to take 72% - 60% 44% 86%
frequent rests
I take one thing at a time 70% 11% 52% 41% 85%
because of my COPD
I am unable to do the level 37% - 20% 15% 48%
of exercise my doctor/
nurse expects me to
do because of my
COPD symptoms
COPD has a great effect 56% - 44% 32% 68%
on my family
In the context of the family, some respondents commented on how
demoralised they felt that the tasks they used to perform were now
being taken over by others. They feel useless.
This all needs little commentary. COPD robs people of their life,
making them feel constantly low and often depressed.
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People with COPD consistently describe themselves as being caught
in a vicious cycle of negativity:
Inability to do anything
Isolation,
alienation,
restriction
Low confidence
and self-esteem
Low morale, depression
It is clear that the emotional impact of COPD on those with the
disease dominates people's experience of it. This is hardly surprising.
But when asked to say how their HCP acts in this respect, the answers
are disturbing:
• "My doctor/nurse asks me about the emotional impact of COPD".
• A half (52%) say "no"
• "My doctor/nurse understands the extent my COPD impacts on my
• family". A quarter (24%) say "no"
• "My doctor spends enough time with me". More than one in three
• (37%) say "no"
Some people with COPD feel enormous frustration, which may stem
from their physical symptoms, or anger at themselves, or anger at their
HCPs. This can manifest itself in any number of ways, but it will have a
direct impact on the person's well being as they live with COPD.
In discussion with HCPs, some said:
• They prefer to treat pleasant and cooperative people. Smokers are
• a particular issue
• They judge successful management of COPD in terms of functional
• and physical improvement
• They do not have the time for deep discussion
• They don't realise how prevalent low self-esteem is amongst people
• with COPD
• Emotions are not in their remit
• Success lies in whether NHS processes are working well
It is clear, then, that these HCPs and the people they are treating are
coming from different worlds.
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Conclusions and
recommendations
Every patient is a person,
every case is a life.
COPD is a degenerative and debilitating condition which has an
enormous impact on people who have it, and on those around them.
But it can be managed successfully.
In order for this to happen, though, HCPs first need to understand
what the disease is, how to diagnose it and how to treat it. With
three million people in the country with COPD, there is not a GP
anywhere who will not come across this disease.
HCPs need to understand the emotional impact that this disease has
on people. They need to understand how emotions will affect every
aspect of managing this disease - from people delaying visiting the
GP in the first place, to how they live with a long-term condition.
And we all need to remember that successful management of COPD
is not about treating a disease, it's about treating a person.
Awareness
The well-being of people with COPD depends on their being able to
manage their disease. To begin to manage their COPD successfully,
people need:
• To know they have got COPD
• To understand what it is, and why they have got it
• To understand how it will progress
Without clear and accurate diagnosis and information, people with
COPD will be mired in confusion. HCPs have a duty to ensure that:
• They understand what COPD is
• They understand what the symptoms are
• They know how to diagnose it
• They take the time to explain to people what the disease is
• They communicate in a language people will understand
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Action
It is encouraging that HCPs retain the confidence of the people they
treat. However, people with COPD need:
• Help with smoking cessation
• Information on what they can do to help themselves
• Access to the full range of relevant treatments
HCPs have a duty to:
• Understand how difficult it can be to give up smoking, offer
• support and advice
• Understand the treatments available for COPD
• Explain the treatments to people with COPD; what they are, what
• they do and why they are important
• Follow the NICE guideline's priorities in the treatment of COPD
Support
People with COPD and their HCPs view their disease in different ways.
But for people with COPD, the emotional impact of the disease
dominates their life.
People with COPD need:
• To have the emotional impact of their disease taken into account
• To understand that their mental health is at risk alongside their
• physical health
• To be offered support and help from appropriate agencies
HCPs have a duty to:
• Recognise the emotional impact of COPD
• Understand how negative emotions can affect a person's attitude
• to themselves, their disease, their treatment and those who are
• treating them
• Offer appropriate support to people with COPD, and those
• around them
• Refer people to other agencies if they are unwilling or unable to
• provide emotional support
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How the British
Lung Foundation
can help
In order to help HCPs, the British Lung Foundation publishes a range
of publications on COPD for people who are affected by the disease.
Publications cover the diagnosis and treatment of COPD; living with
COPD; and dealing with depression. All BLF publications are available
free of charge.
The BLF also publishes a guide for primary care on the Prevention
and Management of Exacerbations in COPD.
The BLF has collaborated with the General Practice Airways Group
(GPIAG) on a guide to managing COPD in primary care.
HCPs are also invited to signpost people with COPD to the BLF
helpline, 08458 50 50 20, where respiratory nurses, welfare and
benefits advisors are available from 10am - 6pm, Monday - Friday.
And the BLF runs a nationwide network of support groups for people
with all lung conditions - called Breathe Easy. Here, people with lung
conditions, and those who look after them, can share experiences
and offer mutual help and support. Many of the people in the
Breathe Easy support network are affected by COPD.
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Appendix - the
landscape of COPD
management
COPD in context
COPD is a highly prevalent, debilitating condition, which has a severe
impact on quality of life. It can render people unable to perform
basic everyday functions such as walking, talking or bathing. The
prevalence and socio-economic burden of COPD, together with the
individual suffering, highlight a clear need for early diagnosis
and treatment.
Mortality
• COPD is now fifth in the UK rankings of the most common causes
• of overall mortality, behind heart disease, stroke, lung cancer and
• breast cancer, respectively
• Britain has one of the highest death rates from COPD in the
• European Union
• COPD is the only major cause of death on the increase globally
• with 30,000 deaths a year in the UK (five per cent of all deaths)
• The UK death rate from COPD was 20 times higher than that from
• asthma in 1999 (30,634 and 1,521 deaths, respectively)
• COPD is the only major cause of death whose incidence is on the
• increase in the UK
Prevalence
• One in eight acute medical admissions in adults is due to COPD
• Approximately 1.5% of the population (900,000 people) have
• been diagnosed with COPD
• It is estimated that up to 75% of all COPD cases are
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• misdiagnosed/ undiagnosed
• In the UK, the rate of COPD has been increasing nearly three times
• more rapidly amongst women than men
• Research suggests that as many as 50% of smokers may
• develop COPD
Economic burden
• An average UK health district serving 250,000 people has 14,200
• physician consultations and 680 hospital admissions annually
• for COPD
• Hospitalisations increased by 50% between 1991 and 2003
• COPD accounts for more than £500 million in direct healthcare
• costs each year, with a further 24 million lost working days
• per annum
• More than five times the number of bed days are spent due to COPD
• than due to asthma (9,600 and 1,800 bed days, respectively)
Patient Status Condition National average
unit cost
In-patient Elective COPD or bronchitis £ 1,177
Non-elective COPD or bronchitis £1,136
Day case COPD or bronchitis £404
Out-patient First attendance Respiratory medicine £163
Follow up Respiratory medicine £114
attendance
How the landscape is changing
Several key factors are having a significant impact on how clinicians
approach the management of COPD.
NICE (National Institute for Health and Clinical Excellence) published
an evidence-based guideline for the diagnosis and management of
COPD in 2004, in line with the current Department of Health focus
upon increasing physician awareness of COPD.
Although its introduction has helped to improve the consistency of
COPD care across the UK, treatment positioning within the guideline
is still not fully understood. Whilst it is beneficial, the NICE guideline
remains an area of uncertainty and further encouragement is needed
for healthcare professionals, to maximise adoption.
In addition, the new General Medical Services (GMS) contract and
Quality and Outcomes Framework, which has seen an unprecedented
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level of investment in general practice, is expected to deliver a wide
range of high-quality services with better clinical outcomes for
patients with COPD. Despite this increased attention on COPD care,
the mortality rate from respiratory disease is double the European
average. Following calls by The Chief Medical Officer, Professor Sir
Liam Donaldson, and organisations such as the British Lung
Foundation and the British Thoracic Society, the Secretary of State
for Health Patricia Hewitt announced a National Service Framework
for COPD in June 2006. The aim of the NSF is to offer more choice
and improve standards of care for people affected by COPD
across England.
There is ever increasing pressure on respiratory care specialists and
physicians to hit stricter COPD management targets. Many physicians
have said they find it extremely difficult to meet these targets as it
means taking on work in new areas. It has also been claimed that
some of the proposed COPD care targets depend heavily on the
availability of local services such as pulmonary rehabilitation.
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The British Lung Foundation
One person in seven in the UK is affected by a lung disease. Whether
it's mild asthma or lung cancer, the British Lung Foundation is here
for every one of them.
This is what we do:
• We support people affected by lung disease through the individual
• challenges they will face. Support is the focus of many of our
• activities, including Breathe Easy, our nationwide support network
• and Baby Breathe Easy, our parent support groups.
• We help people to understand their condition. We do this by
• providing comprehensive and clear information on paper, on the
• web and on the telephone.
• And we work for positive change in lung health. We do this by
• campaigning, raising awareness and funding world-class research.
This project has been supported by an unrestricted educational grant
from Boehringer Ingelheim Ltd and Pfizer Ltd. Research was carried
out by Insight Research Group.
73-75 Goswell Road
London EC1V 7ER
t: 08458 50 50 20
e: enquiries@blf-uk.org
w: www.lunguk.org
Published July 2006
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