Chronic obstructive pulmonary disease Understanding NICE guidance – information for people with chronic obstructive pulmonary disease, their families and carers, and the public Chronic obstructive pulmonary disease: Understanding NICE guidance – information for people with chronic obstructive pulmonary disease, their families and carers, and the public Issue date: February 2004 To order copies Copies of this booklet can be ordered from the NHS Response Line; telephone 0870 1555 455 and quote reference number N0463. A version in English and Welsh is also available, reference number N0464. Mae fersiwn yn Gymraeg ac yn Saesneg ar gael hefyd, rhif cyfeirnod N0464. The NICE clinical guideline on which this information is based, Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care, is available from the NICE website (www.nice.org.uk/CG012NICEguideline). A quick reference guide for healthcare professionals is also available from the website (www.nice.org.uk/CG012NICEquickrefguide), and the NHS Response Line, reference number N0462). National Institute for Clinical Excellence
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ISBN: 1-84257-544-9Published by the National Institute for Clinical ExcellenceFebruary 2004Printed by Abba Litho Ltd, London
National Institute for Clinical Excellence, February 2004. All rightsreserved. This material may be freely reproduced for educational andnot-for-profit purposes within the NHS. No reproduction by or forcommercial organisations is allowed without the express writtenpermission of the National Institute for Clinical Excellence. Contents About this information
If you want to read the other versions of this
Chronic obstructive pulmonary disease Key messages for you and for health professionals Diagnosing COPD
Finding out how severely you are affected
When your COPD is stable Treatment for exacerbations Palliative care Where you can find more information About this information
This information describes the guidance that theNational Institute for Clinical Excellence (calledNICE for short) has issued to the NHS on themanagement of chronic obstructive pulmonarydisease (which is usually shortened to COPD) inadults in the community and in hospitals. It isbased on Chronic obstructive pulmonary disease:management of chronic obstructive pulmonarydisease in adults in primary and secondary care(NICE Clinical Guideline no. 12), which is aclinical guideline produced by NICE for doctors,nurses and others working in the NHS in Englandand Wales. Although this information has beenwritten chiefly for people with COPD, it may alsobe useful for family members, those who carefor people with COPD and anyone interested inCOPD or in healthcare in general.
Clinical guidelines are recommendations forgood practice. The recommendations in NICEguidelines are prepared by groups of healthworkers, lay representatives with experience orknowledge of the condition being discussed, andscientists. The groups look at the evidenceavailable on the best way of treating or
managing a condition and makerecommendations based on this evidence.
There is more about NICE and the way that theNICE guidelines are developed on the NICEwebsite (www.nice.org.uk). You can downloadthe booklet The guideline development process– information for the public and the NHS fromthe website, or you can order a copy by phoningthe NHS Response Line on 0870 1555 455 (quotereference number N0038). What the recommendations cover
NICE clinical guidelines can look at differentareas of diagnosis, treatment, care, self-help or acombination of these. The areas that a guidelinecovers depend on the topic. They are laid out ina document called the scope at the start ofguideline development.
The recommendations in the NICE guideline onCOPD cover the full range of care that should beavailable from the NHS to adults with COPD. They include how the diagnosis should be madeand the treatments that should be offered atdifferent times.
The information that follows tells you about theNICE guideline on COPD. It doesn’t attempt toexplain COPD or the treatments in detail. NHS
Direct is a starting point to find out more andhas some information on some of the medicalconditions that may be involved, such asbronchitis. Phone NHS Direct on 0845 46 47 orvisit the website at www.nhsdirect.nhs.uk.
If you have questions about the specifictreatments and options covered, talk to yourdoctor or nurse (or another health professional,depending on what it is you want to know).
How guidelines are used in the NHS
In general, health workers in the NHS areexpected to follow NICE’s clinical guidelines. Butthere will be times when the recommendationswon’t be suitable for someone because of his orher specific medical condition, general health,wishes or a combination of these. If you thinkthat the treatment or care you receive does notmatch the treatment or care described on thepages that follow, you should talk to yourdoctor, nurse or other health professionalinvolved in your treatment. If you want to read the other versions of this guideline
There are four versions of this guideline:
• this one• the NICE guideline, Chronic obstructivepulmonary disease: management of chronicobstructive pulmonary disease in adults inprimary and secondary care
• the quick reference guide, which is a summary
of the main recommendations in the NICEguideline, for family doctors and their practiceteams; NICE has sent copies of the quickreference guide to doctors and otherhealthcare professionals working in the NHS
• the full guideline, which contains all the
details of the guideline recommendations,how they were developed and informationabout the evidence on which they werebased.
All versions of the guideline are available fromthe NICE website (www.nice.org.uk). This versionand the quick reference guide are also availablefrom the NHS Response Line – phone0870 1555 455 and give the reference number(s)of the booklets you want (N0463 for this version,N0464 for this version in English and Welsh, andN0462 for the quick reference guide). Chronic obstructive pulmonary disease
Chronic obstructive pulmonary disease (which isshortened to COPD) is the name given to acondition where people cannot breathe in andout properly because of long-term damage tothe lungs. In COPD, the airways have becomeblocked (‘obstructed’) to some extent, and theair sacs may have become damaged. (Theairways are the passages through which thegases oxygen and carbon dioxide flow into andout of the body, and the air sacs are whereoxygen passes from the air into the blood, andcarbon dioxide passes out of the blood.) Causesof the blockage include an increased amount ofmucus in the airways and narrowing of thepassages as a result of the airway wallsbecoming thickened. Emphysema is the name forthe damage to the lung tissue in COPD thataffects the ability of the air sacs to transfer airinto the body and that makes the airways floppy.
The changes usually start with inflammation inthe airways, which is the body’s response to aharmful substance (most often cigarette smoke)being breathed in over a period of time. If theinflammation lasts for a while, permanentchanges start to take place.
Although treatments for COPD can help a person
to breathe more easily, they can’t repair thedamage. Key messages for you and for health professionals
The guideline that NICE has issued to the NHScontains many specific recommendationsabout the sort of care a person with COPDshould receive in the NHS and these arecovered on the following pages. Some of therecommendations in the guideline are knownas ‘key priorities for implementation’. They areparticularly important and should be put inplace as a priority. Key priorities Diagnosing COPD
Your doctor should think about COPD as apossible diagnosis if you are over 35, are orhave been a smoker and you tell him or herthat you:
• find that you are short of breath after
going upstairs, exercising or some other type of exertion, or
• have a cough that has lasted a long time, or • often cough up phlegm (‘sputum’) from
your lungs, or
• get a lot of chestiness or wheezing during
Your doctor should test how well your lungsare working using a piece of equipment calleda spirometer. All doctors, nurses and otherhealth professionals who treat people withCOPD should have a spirometer available forthis or should have access to facilities wherethe test can be performed. If they are doing itthemselves, they should have up-to-datetraining to do the test and should understandthe results. Stopping smoking
Giving up smoking is very important if you area smoker with COPD. Your doctor or nurseshould really encourage and help you to dothis, no matter what your age or how longyou’ve been smoking.
Different inhaler medicines
If you are short of breath on exertion, orlimited in what you can do, you should begiven a type of medicine called abronchodilator in an inhaler (see page 24).
Broadly speaking, some bronchodilators havea short-lasting effect while others last forlonger. They are sometimes called ‘short-acting’ and ‘long-acting’ bronchodilators. Ifyou are still having problems with yourbreathing despite using a short-actingbronchodilator in an inhaler, you should begiven a long-acting bronchodilator inhaler.
If your COPD is quite bad and there have beentwo or more times in a 12-month period whenyou’ve had to have antibiotics or steroids tohelp, you should also be given a steroidinhaler. (COPD that’s ‘quite bad’ here meansan FEV1 of 50% predicted or lower, seepage 15 for an explanation.)
Pulmonary rehabilitation if you need it
Pulmonary rehabilitation aims to help peoplewith COPD (and those with other long-termbreathing problems) to have as normal a lifeas possible. It involves a programme ofexercise and discussions with healthprofessionals and other patients to help youunderstand COPD and how to treat it.
If pulmonary rehabilitation would help you,you should be offered a programme that hasbeen designed specifically for you. Using non-invasive ventilation
Non-invasive ventilation (NIV for short) is amethod of helping a person to breatheartificially when their breathing is worseduring a bad attack (this is called anexacerbation, see below). The person wears amask that covers the nose (or less commonly, afull face mask that covers the nose andmouth). This is connected to a small machinethat pushes air through the mask and into theperson’s lungs. NIV should be used for peoplewho, when their COPD is particularly bad,cannot get enough oxygen into their bloodand have too much carbon dioxide in itdespite having the right type of medicines. The medical term for what happens ishypercapnic ventilatory failure.
If you have NIV, the system should be set upand monitored by a team of healthprofessionals who are trained and experiencedin using it. There should be a clear plan aboutwhat to do if you get worse.
During an exacerbation, your COPD gets worseover a few days. You should be offeredvaccinations to stop you getting flu or anotherinfection called pneumococcal infection as this
helps prevent exacerbations. If your COPD isquite bad and you are having two or moreexacerbations per year, health professionalsshould also try to reduce the number ofexacerbations you have by giving you a steroidinhaler and a long-acting bronchodilator. Ifyou still get exacerbations, your doctor ornurse should help you make them less seriousby:
• advising you about what to do at the first
• advising you to start on steroid tablets and
antibiotics as soon as you notice signs of anexacerbation
• using NIV if you need it • using a hospital-at-home or assisted-
discharge scheme when appropriate (seepage 43 for an explanation). Having access to a team of experts
Your care should be provided by a team ofexperts who may be responsible for differentaspects of your care, and making sure you getthe right treatment at the right time. Diagnosing COPD
Your doctor should think about COPD as apossible diagnosis if you are over 35, are or havebeen a smoker and you:
• find that you are short of breath after going
upstairs, exercising or some other type of exertion, or
• have a cough that has lasted a long time, or • often cough up sputum (the medical word for
phlegm) from your lungs, or
• get a lot of chestiness or wheezing during
If COPD is a possibility, you should be asked if:
• you’ve lost weight recently• you find it hard to put effort into any physical
• you’ve coughed up any blood• you’ve been waking up at night• you’ve been getting swollen ankles and/or
• you’re feeling particularly tired• you have worked with chemicals that could
Your doctor should also ask you what makes youshort of breath (breathless) and how your dailylife is affected. He or she will use thisinformation to give you a grade for your
breathlessness using a scale that goes from 1 to5. Sometimes the symptoms of COPD and asthmaare similar, but it is important to be sure whichdisease a person has because the treatments arenot the same. Some of the questions and testsare to help your doctor decide if you have COPDor asthma (see page 18). Spotting COPD early
In order to try to catch COPD early, doctorsand nurses working in GP practices orcommunity clinics should use a spirometer tocheck people who:
• are over 35, and • are current or ex smokers, and • have had a cough for a long time.
This type of check should also be consideredfor people who have long-term bronchitis(inflammation of the airways).
A spirometer is a piece of equipment used tomeasure how well the lungs are working. Checking how well your lungs work
When trying to reach a diagnosis, your doctorshould check how well your lungs are workingusing a piece of equipment called a spirometer.
All doctors, nurses and other healthprofessionals who treat people with COPDshould have the right equipment for this, orshould have access to facilities where it can beperformed. If they are doing the test themselves,they should have up-to-date training to do thetest and should understand the results.
FEV1 and FVC
A spirometer is used to take two importantmeasurements, called FEV1 and FVC.
FEV stands for ‘forced expiratory volume’. TheFEV1 is the maximum amount of air that aperson can force out of their lungs in a second. If a person has COPD, the FEV1 is lower thanwould be predicted from their age, sex andother characteristics.
FVC is short for ‘forced vital capacity’. This is thetotal amount of air that a person can force outof their lungs.
FEV1 and FVC are important measurements for aperson with COPD as they show how much theirlungs have become affected. A person is said tohave an obstructed airflow (as happens in COPD)if their FEV1 is lower than 80% of what would beexpected from their age, height and sex, andtheir FEV1 divided by their FVC is below 0.7. Other tests at diagnosis
Your doctor should arrange for you to have achest X-ray to rule out any other causes of yoursymptoms. A blood test (called a ‘full bloodcount’) will show if your symptoms are due toanaemia. Your body mass index (BMI) shouldalso be calculated (this shows your body weightin relation to your height). Additional tests that may be needed
Other tests may be needed in certaincircumstances, and these are described below. The results of these tests will help the doctorand you to plan your treatment.
More breathing tests if your doctor is still not sure whether it’s asthma or COPD. You will be given a device called a peak flow meter, which measures how fast you can breathe out, and asked to take measurements at various times of the day for several days. A blood test for alpha-1 antitrypsin if you’re young to have the symptoms of COPD (under 40), you’ve never smoked or hardly smoked, or if other members of your family have been alpha-1 antitrypsin deficient. Alpha-1 antitrypsin is an enzyme that helps to protect the lungs against damage from things like cigarette smoke. If
you’re found to have alpha-1 antitrypsindeficiency, you should be offered the chance togo to a centre that has staff who specialise inthe care of people with the condition so you cantalk about the care and support that areavailable. A breathing test to measure your TLCO (transfer factor for carbon monoxide), if your symptoms seem worse than they should be, given the results from your spirometer tests. Transfer factor for carbon monoxide is a way of assessing the lungs’ ability to transfer oxygen to the blood stream. A CT scan of your chest if your symptoms seem worse than they should be given your spirometry results, or if something has shown up on your chest X-ray or if you might need to have surgery because, for example, the treatments aren’t working as well as expected. (CT stands for computed tomography, which is a way of viewing the body tissues.) An ECG (heart trace), an echocardiogram (which uses ultrasound), or both, to check your heart for signs that it may have been affected by the COPD. Pulse oximetry if your breathing is very poor or if there are signs that your heart has been affected. This is to see whether you need to have
some extra oxygen. A pulse oximeter senses howmuch oxygen there is in your blood. A sputum test if you produce a lot of sputum that’s green or brown, to check for signs of infection. Distinguishing between COPD and asthma
Doctors can usually tell whether a person hasCOPD or asthma by asking questions andexamining them. A person who is a smoker (orex-smoker), over 35, has a persistent cough andoften coughs up sputum, and has breathlessnessthat doesn’t vary much from day to day probablyhas COPD. If the breathlessness is variable, or theperson often wakes up at night feeling wheezy,he or she is more likely to have asthma thanCOPD.
Sometimes other tests may be needed (seepage 16). If you have had some of these testsand your doctor is still not sure whether youhave asthma, COPD or both, he or she may try adifferent test called a reversibility test. Withreversibility testing, the doctor gives the patienta medicine to see whether it can improve thefunctioning of the lungs. The test may be triedwith bronchodilator inhalers, steroid tablets orboth.
If the condition gets a lot get better and yourbreathing improves to near normal withtreatment, it’s more likely that asthma accountsfor your symptoms.
Finding out how severely you are affected
If your FEV1 is between 50 and 80% of thatpredicted, you are said to have mild airflowobstruction. If it’s between 30 and 49% of thatpredicted, it’s said to be moderate airflowobstruction. And if it’s below 30% of thatpredicted, the airflow obstruction is severe.
But COPD causes different problems for differentpeople, and some people with airflowobstruction that is considered to be mild can beseverely disabled by their COPD. Your doctorshould work out how bad your COPD is from theresults of your tests, how much it affects yourdaily life, how often you get bad attacks andhow healthy you are otherwise. Once COPD has been diagnosed
Once you’ve been diagnosed as having COPD,your doctor or nurse should:
• highlight that you have COPD in your notes
and include the results of your initialspirometer tests
• help you to try to stop smoking• record the effects of any different medicines
• use a spirometer to check from time to time
• check from time to time that you’re using
• keep a check on whether you need to see a
specialist or other health professional for helpand advice
• check if you need pulmonary rehabilitation • record any changes in your weight. People with mild or moderate COPD
If your COPD is mild or moderate, you should seesomeone for a check at least once a year.
People with severe COPD
If your COPD is severe but doesn't seem to begetting any worse, you probably don’t need tohave regular hospital checks. You should seeyour GP or nurse at least twice a year. He or sheshould check how well your medicines for COPDare working. Attention should also be paid towhether you are depressed or anxious, areeating properly, or need help from otherquarters, such as social services or occupational
therapy, and whether you need long-termoxygen.
There should also be arrangements in place soyou can get a hospital check quickly if you needone.
If you have severe COPD and you’re havingspecialist treatments such as non-invasiveventilation (see page 36), you should haveregular appointments with a specialist. Seeing a specialist
Sometimes it’s necessary for a person with COPDto see a specialist – it may be so that you can getthe best type of treatment for your particularcircumstances. Or it might be because yourdoctor is not completely sure about thediagnosis. You may also see a hospital specialistif you’ve asked for a second opinion about yourdiagnosis.
If you’re given a hospital appointment, you maynot always see a doctor who specialises inbreathing problems. You may see another healthprofessional such as a nurse or a physiotherapistwho works with the doctor and who specialisesin helping people with breathing difficulties. Learning about COPD
Your healthcare team should teach you aboutyour condition and how to help yourself. Youwill need different information at differenttimes when you have COPD, and yourhealthcare team should take account of this.
If you have moderate or severe COPD, youshould be told about non-invasive ventilation(see page 36) and its benefits and limits sothat if this is ever needed in the future youwill understand what is involved. Managing the risk of a bad attack (an exacerbation)
One or more members of your healthcareteam should offer you advice about what todo if you think you are starting anexacerbation (see page 42). This shouldinclude keeping the medicines you might needat home, and knowing who to contact if yoursymptoms do not improve quickly. When your COPD is stable
Your COPD is said to be stable if your symptomsare more or less the same from day to day.
Giving up smoking is very important if you are asmoker with COPD, no matter how long you’vebeen smoking. Your doctor or nurse shouldreally encourage and help you to do this,whatever your age. He or she should ask youabout how many cigarettes you smoke each dayand write this in your notes.
If you are having trouble stopping, your doctoror nurse should discuss trying one of the‘stopping smoking’ programmes that are nowavailable (such as medicines or patches, withextra support to help you use them successfully),though there may be reasons why some optionsmay not be suitable for you.
If you try to stop smoking but are unsuccessful,your doctor or nurse will not normallyencourage you to have another go until you’vewaited for at least 6 months. This should giveyou time to rebuild your motivation to succeed. You may be encouraged to try again sooner ifthere are reasons why another attempt might bemore successful. Medicines
There are several different types of medicinesthat can help the symptoms of COPD. Thedecision about which medicines to use dependson how severe the COPD is, how it is affectingyour everyday life, and the side effects of themedicines. Sometimes you may need to tryseveral different medicines or combinations ofmedicines to find out what works best for you.
In COPD, the airways can become narrowedbecause the muscle layers around the passagestighten (‘contract’). A type of medicine called abronchodilator helps to reduce this narrowingeffect by relaxing the muscle layers. Broadlyspeaking, some bronchodilators have a short-lasting effect while others last for longer. Theyare sometimes called ‘short-acting’ and ‘long-acting’ bronchodilators.
If the COPD is making you breathless andlimiting what you do, you should be given ashort-acting bronchodilator inhaler to use.
When your doctor or nurse comes to review howwell this is working, he or she should look at:
• what you’ve been able to do since you’ve had
an inhaler, compared with what you could dobeforehand
• how quickly the inhaler eases your breathing• your results in spirometer tests.
If you’re still having problems, you should alsobe offered either a long-acting bronchodilatorinhaler, or a combination of two different typesof short-acting bronchodilators called beta-agonists and anticholinergic medicines. As withother aspects of your treatment, you should beinvolved in the decision about which option totry – this will include discussing with your doctorthe effects of medicines you’ve tried so far, thepossible side effects of different medicines andtheir costs.
Theophylline is a type of bronchodilator that is atablet rather than being inhaled. You should beoffered theophylline only after you’ve triedshort-acting and long-acting bronchodilatorinhalers. This is because if there’s too muchtheophylline in a person’s body, or the person isalso taking certain other types of medicines, itcan cause problems. You might also be tried ontheophylline if you can’t use inhalers. A persontaking theophylline has to have regular bloodtests.
If you try theophylline, your doctor or nurseshould check:
• how you’ve been on theophylline• what you’ve been able to do since you’ve had
it compared with what you could dobeforehand
• your results in spirometer tests.
Doctors should be particularly cautious whenusing theophylline in older people, because theirbodies deal with medicines at slower rates andthey are also more likely to be taking othermedicines. If you’re given antibiotics known asmacrolides or fluoroquinolones, yourtheophylline dose should be reduced. Thisshould also be done if your doctor gives you anyother medicine that can cause problems if takenat the same time as theophylline. Steroids
If your COPD is quite bad and there have beentwo or more times in a 12-month period whenyou’ve had to have antibiotics or steroid tabletsto help, you should also be offered a steroidinhaler. (COPD that’s ‘quite bad’ here means anFEV1 of 50% predicted or lower, see page 15 foran explanation.) COPD isn’t one of the disordersthat steroid inhalers are licensed for, but doctors
can prescribe them for COPD once they’vediscussed the possible benefits and side effectswith you.
If you use a steroid inhaler a lot or if you are ona high dose, there’s a risk of developing sideeffects such as osteoporosis (where the bonesbecome weakened and break more easily). Yourdoctor should be aware of these risks, which areusually quite low, and should watch out for sideeffects. Your doctor should discuss the risks tohelp you decide about using the steroid inhaler.
In general, you shouldn’t be kept on steroidtablets for long periods. But sometimes peoplewho have severe COPD and are given the tabletsto help during an exacerbation might need tostay on them.
If you are given steroid tablets, you should be onas low a dose as possible. There is a risk of sideeffects with long-term steroids. If you’re onsteroid tablets for a long period you should bemonitored for signs of side effects, includingosteoporosis, and given preventive treatment ifyou need it. People aged 65 and over who aretaking steroid tablets for a long period shouldhave treatment to prevent osteoporosis as amatter of course, unless there are reasons thatthey can’t take it. Medicines to help with sputum
If you cough up a lot of sputum from the lungs(this is called a productive cough), your doctorshould think about trying what’s known as amucolytic medicine. If this is successful andlessens your coughing and the amount ofsputum you're coughing up, you should stay onit.
If you produce an excessive amount of sputum, aphysiotherapist should show you how to use aspecial mask and how to breathe to try toreduce the effect of the sputum. Medicines and supplements that should not be used
Some medicines and supplements should not generally be used because either they have been shown not to work in people with stable COPD or there isn’t enough research to justify their use.
• antibiotics given to try to prevent infection
(rather than to fight an infection that youalready have)
supplements (which are a type of antioxidanttherapy)
• alpha-1 antitrypsin replacement treatment in
people who are found to have alpha-1antitrypsin deficiency.
Certain combinations of medicines seem to beparticularly helpful in COPD, when a singlemedicine isn’t working well on its own. How wella combination works should be monitored in thesame way as for single medicines. If yoursymptoms do not improve within 4 weeks ofstarting a combination of medicines, your doctorshould advise you to stop taking it. Inhalers and other devices Inhalers
You should be prescribed an inhaler only afteryou’ve tried it and your doctor or nurse is surethat you can use it properly. If you can’t get thehang of a certain type, you should be able to tryanother one. Most people can learn to use aninhaler unless they are seriously affected by acondition such as Alzheimer’s disease.
From time to time, your doctor or nurse shouldcheck that you’re still using your inhaler
correctly. If necessary, he or she should show youagain the correct way to do it.
Your doctor might need to adjust the dose ofyour medicine to suit the way you use yourinhaler.
A spacer device attaches to an inhaler. With aspacer, the user doesn’t have to co-ordinatepuffing and inhaling. If you need a spacer, youshould be given the right type of spacer for yourinhaler.
When you’re using your spacer, you shouldoperate the inhaler once and then inhale. Repeat these steps as necessary. Spacers workjust as well if you breathe in and out normally asif you take single breaths.
Clean your spacer using water and washing-upliquid and let it dry naturally. Don’t do this morethan once a month, though, and don’t dry itwith a towel or too much static will build up andit won’t work as well as it should. Before you useit, wipe the mouthpiece. Nebulisers
A nebuliser is a device that converts a liquidcontaining the medicine into an aerosol (or mist)
that can be breathed in. In this way, higherdoses of medicines can be taken.
Your doctor should think about trying anebuliser if you’re using a hand-held inhaler butyou’re still affected by breathlessness. Beforeprescribing a nebuliser, your doctor should thinkabout whether you would be able to use it, or ifyour carer could help you. You should usually beable to choose whether you want a nebuliserwith a facemask or a mouthpiece (though it hasto be a mouthpiece for some types of medicine). If a nebuliser is prescribed, you should haveaccess to equipment, servicing, advice andsupport.
Your doctor should check to see whether thenebuliser therapy is helping your breathlessness,or increasing your ability to carry out dailyactivities or to exercise. If it isn’t, he or she maytalk to you about stopping it.
Your doctor should check whether you need tohave extra oxygen if:
• you have severe airflow obstruction (see
page 19), or
• there is an increase in the number of your red
blood cells (‘polycythaemia’), or
• there is swelling in your limbs, or • your skin has a bluish tinge because of a
shortage of oxygen, or
• there’s a raised blood pressure in the jugular
• the amount of oxygen in your blood is low
(described as being below 92% saturation).
If you have moderate airflow obstruction, yourdoctor should also think about whether youmight need extra oxygen.
To see whether you need extra oxygen inaddition to your other treatments for COPD, theamount of oxygen and carbon dioxide in yourblood should be measured. This should be doneon two occasions that are at least 3 weeks apart. If the results show that you’re not able tobreathe in enough oxygen normally (see box,page 33), you should be given extra oxygen.
If you need a fixed supply of oxygen at home touse for long periods, you should be given anoxygen concentrator. This is a machine thatpurifies oxygen from room air and provides acontinuous supply. It plugs into the electricitysupply, and takes oxygen into rooms that youuse through tubing fixed around the skirting. Ifyou smoke while using extra oxygen, you needto be aware that this could cause a fire orexplosion.
To get the benefits of oxygen treatment, youshould breathe it for at least 15 hours a day. Once you’re having this long-term oxygentreatment, you should have regular assessmentsat least once a year by someone familiar withthe treatment. The assessment should includepulse oximetry (see page 17).
When extra oxygen should be given
When deciding if a person needs extraoxygen, healthcare professionals take ameasurement called the PaO2. PaO2 is amedical term meaning ‘partial pressure ofoxygen in arterial blood’, and it gives an ideaof how much oxygen is being transferred fromthe lungs to the blood.
A PaO2 below 7.3 kPa means extra oxygen isneeded to boost the amount the person canbreathe in.
Extra oxygen is also needed for a person witha PaO2 between 7.3 kPa and 8 kPa if he or shehas an increase in the number of red bloodcells because of the problem with oxygen (themedical name is secondary polycythaemia), orbecomes low in oxygen at night, or hasswelling in the limbs. Ambulatory oxygen
Ambulatory oxygen is when you use an oxygensupply that you can move around with. It shouldbe prescribed for you if you are already havingoxygen therapy and you want to continuehaving oxygen when you’re away from home. Itshould also be considered if your blood oxygendrops when you do an activity, if it’s shown thatoxygen helps you do activities and/or helps withbreathlessness, and if you’re motivated to use it. In general, it shouldn’t be offered if a person hasa PaO2 above 7.3 kPa and the blood oxygendoesn’t drop during an activity. (See ‘When extraoxygen should be given’ for an explanation ofPaO2.)
Before you are prescribed this type of oxygentherapy, you should have an assessment by aspecialist.
The kind of equipment that should be availableif you have ambulatory oxygen depends on howlong you use it for each day and the amount ofoxygen needed (see box, page 35). Treatment with short bursts of oxygen
Treatment with oxygen for short periods (usingcylinders) is an option only when othertreatments have failed to help severebreathlessness. If you try it, you should carry onwith it only if the breathlessness improves. How long you use it for Best type of equipment
Small cylinder with oxygenconserving device
with flow rates greaterthan 2 litres/minute
If your COPD is limiting what you can do but youare on the best treatment, you should be offereda programme of pulmonary rehabilitation unlessyou cannot walk, have unstable angina, or haverecently had a heart attack. Pulmonaryrehabilitation is a programme of care andactivities co-ordinated by different types ofhealth professional who work as a team to helpyou live as normal a life as is possible and to beas self-sufficient as possible. The programmeshould be designed specifically for you, withyour full involvement. It should include exercises,together with information about COPD, diet andother ways of dealing with COPD. The sessionsshould be held at times and in a place that suits
you, and you should not have to wait too longto start the programme.
It may sometimes be difficult or challenging, butto make the most of a pulmonary rehabilitationprogramme it is important that you arecommitted to working as closely as possible withyour healthcare team.
Non-invasive ventilation (NIV for short) is amethod of helping a person to breatheartificially. The person wears a mask that coversthe nose (or less commonly, a full face mask thatcovers the nose and mouth). This is connected toa small machine that pushes air through themask and into the person’s lungs.
If you have a long-term problem getting enoughoxygen into your blood and have too muchcarbon dioxide in it, and you have needed helpwith breathing (ventilation) in the past, youshould be referred to a specialist centre to seewhether you need NIV. Similarly, if having long-term oxygen treatment is causing problems, youshould be referred for a discussion about NIV.
Guarding against chest infections Vaccinations
You should be offered a vaccination againstpneumococcal infection (this bacterial infectioncan cause pneumonia and other illnesses). Youshould also be offered an annual flu jab. Medicines to fight flu
If you have the start of what seems like flu, youshould see your doctor as soon as possible. Youmay be able to take a medicine called zanamiviror one called oseltamivir to help stop the flufrom getting a grip. If you are prescribedzanamivir, your doctor should discuss thepossibility that it might make your airways gointo a spasm. You should keep a short-actingbronchodilator inhaler close by while you’retaking a course of zanamivir. Cor pulmonale
Cor pulmonale is heart condition that happensas a consequence of a lung condition such asCOPD. If there are signs of a heart problem, suchas swelling of the ankles, then cor pulmonaleshould be considered as a diagnosis. Your doctorshould check to make sure there isn’t anothercause of the swelling.
If you have cor pulmonale, your doctor shouldcheck whether you need long-term oxygentherapy. The swelling can usually be controlledusing a diuretic (water tablet).
Some types of medicine are not generallyrecommended for cor pulmonale in people withCOPD (though they may sometimes beprescribed for other conditions in people withCOPD). These are ACE inhibitors, calcium-channelblockers, alpha-blockers and digoxin.
Some people with very specific conditions maybe able to have an operation on their lungs.
A person who is breathless with an FEV1 of lessthan 50% of that predicted and who has a largeair pocket in the lung (called a ‘bulla’) should bereferred to a specialist to discuss the possibilityof an operation to remove the bulla (called abullectomy). The operation can only beconsidered if the lung has not become toodamaged.
An operation may also be possible for a personwith very severe COPD that’s mainly affectingthe upper part of the lung and who is breathlessdespite using medicines and having hadrehabilitation (see page 35). He or she should be
referred to a specialist to discuss the possibilityof an operation to remove part of the lung. Unfortunately, this operation is not possible ifthe lungs have become too badly damaged, forexample if:
• the FEV1 is less than 20% of that predicted• there is a higher than normal amount of
• there is emphysema in other parts of the
• the TLCO is less than 20% of that predicted
A lung transplant may be an option for someonewith very severe COPD who is very breathlessdespite the medicines and unable to carry outbasic everyday tasks. Whether or not atransplant is possible depends on the person’sindividual condition and general health and onthe local arrangements for assessing people forthis type of operation. Unfortunately many ofthose accepted for a transplant do not get one. Spotting and helping with anxiety and depression
Having a long-term illness such as COPD cansometimes make a person depressed or causeanxiety. Health professionals who treat peoplewith COPD should watch out for signs of this.
And if a person with COPD is found to bedepressed or anxious, he or she should betreated for this in the same way as someonewithout COPD would be – with medicines andsupport.
Your BMI should have been checked at diagnosis(see page 16). If it’s found to be high or low or isvery changeable you should be offered adviceand information about your diet.
If your BMI is low, you should be given dietarysupplements and encouraged to exercise to helpbuild yourself up. Doing your normal activities
You should be asked regularly how easy you findit to do your normal day-to-day activities andhow breathless you become when you are doingthem. You should be offered an assessment tocheck whether you need some extra help (suchas specially adapted equipment, or being taughttechniques to make tasks easier). If you arehaving difficulties with day-to-day activities youshould also be asked if you would like to bereferred to social services for them to checkwhat help might be available for you. Special considerations Air travel
If you’re having long-term oxygen treatmentand want to fly somewhere, your doctor ornurse should check whether it would be OKagainst a set of recommendations produced by aprofessional body called the British ThoracicSociety. The same applies for people who havean FEV1 less than 50% of that predicted.
If your COPD is caused by a bulla in your chest,your doctor or nurse should discuss the possiblerisk of pneumothorax during a flight. Apneumothorax is where air escapes into thechest from the lung and presses against it,making it more difficult to breathe. Scuba diving
Scuba diving isn’t recommended for people withCOPD. Having an operation
If you need an operation for a problem notrelated to your COPD, the decision aboutwhether or not you are fit enough to have itshould be taken by your consultant anaesthetistand consultant surgeon. It will depend on anumber of things, including the severity of yourCOPD, your general health and how much you
need the operation. If there’s time before anoperation, your doctor should make sure thatyour COPD is being treated as well as possible,including having pulmonary rehabilitation (seepage 35). Treatment for exacerbations
Some people with COPD find that they haveattacks when their symptoms becomeparticularly bad. These are called ‘exacerbations’. The person may become much more breathless,may start to have a cough, or may notice thatmore sputum is being produced or that thesputum that’s coughed up is a different colourthan normal. Your regular treatment may needto be adjusted and you may need additionaltreatment to help you recover from anexacerbation. Helping yourself
If you and your doctor or nurse think that youare likely to have an exacerbation, you should begiven advice about what to do at the first signthat one might be on its way. If you have a carer,he or she should also be given this advice. Itshould include advice about:
• starting steroid tablets if you think you are
developing an exacerbation, that is if you
notice you are coughing more or becomingmore breathless and it’s interfering with yournormal activities (as long as it’s OK for you totake steroid tablets, you should be given someto keep at home)
• starting antibiotics if you notice that your
sputum has turned green or brown (again,you should be given some of these to keep athome)
• making changes to your bronchodilator
medicine to help with your symptoms.
You should also be advised to contact yourdoctor or nurse if things don’t improve. Deciding whether you need hospital treatment
Most people can be treated at home if they havean exacerbation, but some will need to go intohospital. The decision about whether a personshould go into hospital depends on factors suchas the severity of the exacerbation and theperson’s COPD, the person’s general health, andhow well he or she would be able to cope athome.
Sometimes someone who would otherwise haveto go into hospital can be treated at home afterassessment at a hospital or after a brief stay inhospital. The schemes that support this are called
‘hospital-at-home’ or ‘assisted-discharge’schemes, and they involve health professionalswho have experience in helping people withCOPD. Doctors need to look at a person’sindividual circumstances and preference, and thelocal arrangements and resources when makinga decision.
If you’re staying at home
If you are being treated at home, but yourexacerbation seems quite bad, your doctor ornurse may check the level of oxygen in yourblood using a pulse oximeter (see page 17). It’snot usually necessary to send away a sample ofsputum for tests. If you go into hospital
If you go into hospital because of anexacerbation, you should:
• have a chest X-ray• have your oxygen and other blood gases
• have an ECG (heart trace) to check your heart
(to see whether there are any other reasonsfor your symptoms)
• have a sputum sample tested if your sputum
If you have oxygen, the concentration that youare given should be put in your notes.
If you have been taking theophylline, theamount of it in your body should be checkedwhen you go into hospital. Treatment
An increase in breathlessness is common duringan exacerbation. Usually, the treatment is toincrease the dose or frequency of short-actingbronchodilators that a person is taking. Thesemight be given using a nebuliser if, for example,a high dose is needed or you are likely to find itdifficult to use an inhaler (see page 30). If youuse a nebuliser in hospital, you should bechanged back to an inhaler as soon as things areimproving because this may mean you can leavehospital more quickly.
If you need to have oxygen at the same time, itmight have to be given through your nose. Steroids
As long as there are no strong reasons why youshouldn’t have them, you should be given
steroid tablets when you go into hospital withan exacerbation of your COPD.
If you haven’t gone into hospital but yourbreathlessness has increased so that it’sinterfering with your normal activities, youshould tell your doctor as soon as possible. He orshe should think about giving you steroid tablets(as long as there are no strong reasons why youshouldn’t have them).
The course of steroids should last for up to2 weeks. You should be told about the effects oftaking repeated courses of steroids, and youshould also be advised why, when and how tostop taking them.
If you need courses of steroid tablets oftenbecause you get a lot of exacerbations, yourdoctor should consider giving you preventivetreatment for osteoporosis. Osteoporosis can bea side effect of using steroids for a long time. Antibiotics
If your sputum has turned green or brownduring this exacerbation, you should be givenantibiotics (the colour change is a sign ofinfection). Otherwise, you shouldn’t haveantibiotics unless you have a chest X-ray and itshows signs of infection, or you show signs ofhaving pneumonia. Theophylline
If you are taking a bronchodilator from anebuliser and it does not improve yourbreathlessness, your doctor might try you ontheophylline delivered directly into a vein. If thishappens, your theophylline level should bechecked within 24 hours of starting on it, andafterwards at intervals that your healthcareteam thinks are appropriate. Doxapram
Doxapram is a medicine that can help tostimulate breathing. It should be used only whennon-invasive ventilation is not available or is notsuitable for an individual. Doxapram is oftenused when the person isn’t breathing wellenough to get enough oxygen into the bloodand clear carbon dioxide from it (this is called‘respiratory failure’).
All the health professionals who treat peoplewith exacerbations of COPD should have a pulseoximeter available to them. This piece ofequipment senses how much oxygen there is in aperson’s blood.
During an exacerbation, the amount of oxygenin the blood (more accurately, the degree to
which the blood in the arteries is saturated withoxygen) should be kept above 90% using extraoxygen if necessary. If your oxygen saturation isnot known, you should be given extra oxygen ifyou are breathless during an exacerbation.
Before the ambulance arrives and during thejourney to hospital you should not be given toomuch oxygen and the amount of oxygen you aregiven should be adjusted up or down to keepyour oxygen saturation between 90% and 93%.
Once you are in a position to have your bloodgases measured using a blood test (for example,when you reach hospital), this should be doneand the mix of gases that you’ve been breathingshould be noted. This test should be repeatedregularly to see the effects of treatment. Non-invasive ventilation
NIV should be used for people who, during anexacerbation, cannot get enough oxygen intotheir blood and have too much carbon dioxide init despite having the right type of medicines. The medical term for what happens ishypercapnic ventilatory failure.
If you have NIV, it should be given to you in aplace specially set up for NIV and by staff whoare trained and experienced in using it. Thereshould be a clear plan about what to do if youget worse. Intensive care and ventilation
If you become very poorly during anexacerbation, you should be treated in anintensive care unit. It may also be necessary toconnect you to a ventilator to let it do thebreathing for you. The decision about when todo this depends on a number of things, such asyour FEV1, your BMI, whether you need oxygenwhen you’re stable and whether you have anyother medical conditions. Clearing sputum
If you have a problem clearing sputum, aphysiotherapist may be able to help you using amask that helps to clear the sputum away (this iscalled a positive expiratory pressure mask). Recovery
Your recovery from an exacerbation should bemonitored by medical staff who should checkyour symptoms and watch your breathingregularly. If you had respiratory failure (whenyour lungs weren’t working well enough to getenough oxygen into your blood), thendepending on what happened, your blood gasesshould either be monitored using a pulseoximeter (see page 17) or by testing samples ofblood in a machine. Before you go home from hospital
Before you go home, your lungs should bechecked using a spirometer, and you should beback on the best dose of bronchodilator for you.
If you had respiratory failure during theexacerbation, then your blood gas results orpulse oximetry should be satisfactory before yougo home.
Before you go home, you and your family shouldbe clear about what you need to do and shouldknow any special instructions for taking themedicines you are on. Before you leave hospital,arrangements should be made about check-upsand any extra help you might need at home. Ifyou, your family or your doctor have anyconcerns that you might not be able to manageonce you leave hospital, you might have aformal assessment of what help you need. Palliative care
If a person’s COPD is at such an advanced stagethat other types of treatment can’t give anyfurther benefit, the person may need a type ofmedicine called an opiate to help relieve thebreathlessness and make him or her morecomfortable. Antidepressants, tranquillisers and
oxygen may also be used if they might help withthis.
At this stage, a person and their family or carersshould be able to see health professionals andothers who specialise in relieving discomfort(they are known as the ‘palliative care team’). They should have access to the full range ofservices offered by these teams, such as hospiceservices. Where you can find more information
If you need further information about anyaspects of COPD or the care that you arereceiving, please ask your doctor, nurse or otherhealth professional. You can discuss theinformation in this booklet with them if youwish, especially if you aren’t sure aboutanything. They will be able to explain things toyou. NHS Direct may also be helpful – phone0845 46 47 or visit the NHS Direct website atwww.nhsdirect.nhs.uk.
For further information about the NationalInstitute for Clinical Excellence (NICE), theClinical Guidelines Programme or other versionsof this guideline (including the sources ofevidence used to inform the recommendations
for care), you can visit the NICE website atwww.nice.org.uk. At the NICE website you canalso find information for the public about otherguidance in the following areas:
• the use of nicotine replacement therapy (NRT)
and bupropion for smoking cessation,reference numbers N0084 (English) and N0085(English and Welsh) (based on NICETechnology Appraisal Guidance No. 39)
• the use of zanamivir, oseltamivir and
amantadine for the treatment of influenza,N0200 (English) and N0201 (English andWelsh) (based on NICE Technology AppraisalGuidance No. 58).
These can also be ordered from the NHSResponse Line (phone 0870 1555 455). National Institute for Clinical Excellence
FERTILITY HISTORY FORM 1. IDENTIFYING INFORMATION Name _________________________________________ Partner’s Name ___________________________ Number of years together __________________________ Primary MD ____________________________________ Reproductive Endocrinologist: ______________________ Reasons you are coming to see us: _____________________________________________
Chapter 13 Sexuality and Mental Health Issues Dorothy M. Griffiths, Debbie Richards, Paul Fedoroff, and Shelley L. Watson Learning Objectives Readers will be able to: 1. Compare the sexual wellness of persons with developmental disabilities to the sexual health of non-disabled persons. 2. Define sexual abuse of persons with developmental disabilities and apply the double-edged