Lost in translation. bridging the communication gap in COPD. a report by the British Lung Foundation

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1 bridging the communication gap in COPD a report by the British Lung Foundation enquiries@blf-uk.org 1

2 Contents p.3 p.7 p.7 p.12 p.15 p.18 p.20 p.21 p.24 Introduction Survey results in detail Awareness Action Support Conclusions and recommendations How the British Lung Foundation can help Appendix - the landscape of COPD management About the British Lung Foundation

3 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

4 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 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.

5 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 5

6 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. 6

7 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 Emphysema Asthma Lung disease 27 Bronchitis Shortness of breath/ air Breathing difficulties Spontaneous Prompted Breathlessness/Breathless %of respondents 7

8

9 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 Emphysema Asthma Bronchitis Lung disease 27 Don t know Chest infection/ virus Pneumonia None Label at first consultation Subsequent label 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: I understand all I need to know about my COPD My smoking has led to my COPD I feel I was just unlucky to get COPD % of respondents Total Mild (n=)100 (n=9) Moderate (n=25) Mild/Moderate (n=34) Severe (n=66) 60% 44% 60% 56% 62% 46% 50% 47% 48% 46% 38% 11% 44% 35% 39% There is a family history 24% 11% 16% 15% 29% COPD is just part of getting old 9% 11% 8% 9% 9% 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). 9

10 Perceptions of how COPD will progress: Get a lot worse Get a bit worse Stay the same Improve a bit Improve a lot Don t know % 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 Wheezing Cough Excess mucus/phlegm 7 56 Chest pain Spontaneous Chest infection 5 Prompted Difficulty in walking %of respondents 10

11 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). 11

12 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. 12

13

14 Total (n=)100 Mild (n=9) Moderate (n=25) Mild/ Moderate (n=34) Severe (n=66) My treatment helps with the management of my COPD I am not reliant on my medication to live a normal life and only need it once in a while 74% 56% 72% 68% 77% 11% 44% 4% 15% 9% 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. 14

15 Support These are some of the ways in which people with COPD describe the effect it has on their life: Total Mild (n=)100 (n=9) Moderate (n=25) Mild/Moderate (n=34) Severe (n=66) My COPD slows me down 83% 33% 64% 56% 97% I have to cut down on activities (walking, shopping, playing with the grandchildren, gardening) I need to take frequent rests I take one thing at a time because of my COPD I am unable to do the level of exercise my doctor/ nurse expects me to do because of my COPD symptoms COPD has a great effect on my family 79% 33% 56% 50% 94% 72% - 60% 44% 86% 70% 11% 52% 41% 85% 37% - 20% 15% 48% 56% - 44% 32% 68% 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. 15

16 People with COPD consistently describe themselves as being caught in a vicious cycle of negativity: Inability to do anything Low confidence and self-esteem Isolation, alienation, restriction 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. 16

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18 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 18

19 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 19

20 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, , 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. 20

21 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 21

22 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 attendance Respiratory medicine 114 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 22

23 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 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. 23

24 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 Goswell Road London EC1V 7ER t: e: enquiries@blf-uk.org w: Published July 2006 British Lung Foundation 2006

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