You have questions about CPE and CRE? Issued by the HSE Health Care Associated Infection and Antimicrobial Resistance Response Team.

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1 You have questions about CPE and CRE? Issued by the HSE Health Care Associated Infection and Antimicrobial Resistance Response Team. May 2017 This sheet gives answers to some common questions that patients and health care workers have about CPE and CRE. Over the years CPE and CRE have both been used quite a bit and often people use them to mean more or less the same thing. Most of the time it probably does not matter all that much if you say CPE or CRE but they are not exactly the same thing. One of the questions below tries to tell you the difference. These questions and answers are intended to be useful for healthcare workers who want practical answers to questions that patients ask and hopefully also for patients and members of the public who have questions to read this themselves. Some people will have very few questions and will not want to know any of the science some will want to find out all they can. If there are common questions that are not covered here please send the question by to hcainational.lead@hse.ie. If any of these answers don't seem to make sense please send an to hcainational.lead@hse.ie and we can try to do better when this is updated. Hopefully we can put update this soon and put on a website to make it easy for people to find. You might also find the following leaflets helpful. There is a patient information leaflet available at this link What is CPE? CPE is the newest in a long line of what people sometimes call superbugs. When we talk about superbugs we mean bacteria that are hard to kill with antibiotics. The word bug is used because for many people it seems easy to use. Of all the superbugs we have had CPE is the hardest to kill with antibiotics. We think the number of people who carry CPE in Ireland is still fairly small. This means that if we take very good care of people who carry CPE there is still time to stop it becoming very common. 1

2 What does it mean for me if I carry CPE? For most people they first hear that they carry CPE when someone come to tell them the result from the have swab or a sample of faceces (poo) tested in a lab to check for CPE. If the swab is positive this means that the person is carrying the CPE bug in their gut. In most people the CPE will stay in the gut. If CPE stays in the gut it will do no harm. If you have been told that you carry CPE in your gut (carrier /colonisation) then most likely it will not do you any harm. If you carry CPE you will see that hospital or nursing home staff will have to take extra care with you to help stop spread of CPE to other people. If you carry CPE the hospital will try to make sure that you have your own room and your own toilet and shower. If the hospital can t give you your own room with a toilet and shower they will try to make sure you are sharing a rooms with someone else who has CPE too. The hospital will try to make sure that you do not have much contact with other patients. People will have to use aprons and gloves when they care for you more than they use aprons and gloves for most other people. Sometimes staff will wear a full surgical gown with long sleeves to cover their uniform when they are taking care of you. What does it mean if the nurses and doctors say they want to test me for CPE? Testing you for CPE means taking a swab from the back passage (rectum). The swab is very small so it does not hurt to have the swab taken but for many people it does feel at least a bit odd, annoying and intrusive. For some people it may seem a disgusting idea. Taking the swab is very important. CPE does not cause diarrhoea, vomiting or upset tummy. The reason for taking the swab is to get a sample of the gut bacteria so that they lab can check to see if you are carrying CPE in the gut. If there is CPE in your gut it is helpful to know because if you go on to develop an infection somewhere else in your body weeks or months later the nurses and doctors caring for you will know very early on what they might be up against. Knowing if you carry CPE is also important to help stop spread of CPE buts and protect other patients. If you really can t stand the idea of a rectal swab then a sample of faeces (poo) can be used but this means you need to tell the nurses or doctors before you go to the toilet so that they can arrange with you to get the sample 2

3 Is it unusual that I am upset and that I feel I am treated like I am dirty and dangerous. Many people that carry the CPE but and other superbugs are often very upset about all the special steps taken by nurses and doctors when taking care of them. Some patients say they feel like a leper or they are stigmatised. It is easy to understand why people feel that way it is upsetting to be singled out and treated differently. The steps taken are never meant to make you feel bad. If you can put up with this extra stuff as best you can it helps to protect other patients from catching CPE and the hospital and the staff are very thankful for your help. Will I miss out on things or have delays because I have CPE. You should not have to suffer longer delays because you carry CPE. If you are having surgery your surgery does not usually need to be put last in the day. No hospital or nursing home should refuse to admit you because you carry CPE. Everyone in the hospital and nursing home should know that it is not your fault you carry CPE and you should be made to suffer for it. If the hospital or nursing home take sensible steps when caring for you and if you can put up with the extra steps then you are not a big risk to other people. If I carry CPE who did I get it from? It is usually impossible to say for sure where and when you got CPE. If you get CPE from someone today you will not notice anything, you will not feel sick. If you got tested today the lab test would not find the CPE. It usually take a week or three or four weeks from the time you pick up CPE to the time when it can be found on lab testing. In the meantime you come and go you see lots of different nurses and doctors and other patients. If you carry CPE and you have been in a hospital in Ireland recently and if you have not travelled outside of Ireland recently then it is most likely (but not certain) that you got CPE in hospital. Sometimes we have a fairly good idea that CPE was picked up in particular hospital or even a particular ward because of contact with someone with a similar bug but we will still not know exactly when CPE was picked up in most cases. We know that CPE sometimes spread to new people in nursing homes. We know also that it can spread between couples/partners and we know it is sometimes found in the environment. 3

4 Am I a danger to my family and visitors? If you carry CPE it is Okay for your family and friends to come to see you in hospital or at home. In the hospital or nursing home it is best if they just come to see you and then leave the hospital without going to see other people. The chance of spread of CPE to most friends and family is usually small especially if everyone keeps their hands clean. You do not have to be afraid to shake hands or hug people. Even if family or friends (including children) pick up CPE there is very little chance it will make them sick if they are in good general health. If you have family or friends who are frail or have some serious disease then the is a little bit more risk if they catch CPE and it is good for you and them to be as careful as you can about keeping their hands clean. If you have friends or family who help you with very personal things like going to the toilet, changing a stoma bag or if they have very close contact with you in other ways then there is probably more chance that that will pick up CPE. If they get someone at the hospital to show them how to wash their hands and take any other extra care that with help to stop them picking up CPE. When I go home can my grandchildren come to see me? Yes. The risk of spread of CPE to grandchildren who come for a visit is small. It is even smaller if everyone carries out hand hygiene/washes their hands properly after going to the toilet and before they eat. It is a good idea make sure the toilet is flushed and the toilet seat is wiped with disinfectant after you use it. There is no need to put disinfectant into the toilet bowl. People will not usually put their hands down there and putting a lot of disinfectant into the toilet bowl is a waste of money and can harm the environment. What should it tell people about CPE? Anytime you have to go to the doctor, the clinic or the hospital you should tell them when you make the appointment and when you arrive that you carry CPE. This helps people to stop spread of CPE. You do not have to tell family, neighbours and friends that you are carrying CPE if you do not want to. 4

5 Is there any way I can get rid of CPE? CPE is a gut bug. Once CPE settles into the gut it usually stays for a long time. Antibiotics will not help you to get rid of CPE. In fact antibiotics usually make CPE stay in the gut even longer because they kill of the normal gut bugs and make the gut a better home for the CPE. If you have good health and don't need to take any antibiotics for a long time that gives you the best chance of getting rid of CPE or at least having it shrink to very small numbers. If I need an antibiotic will the antibiotic work? For most people carrying CPE who develop an infection (a skin infection, sore throat, chest infection or pneumonia) it is usually not the CPE that is causing the infection. If the infection is a viral infection or mild infection it is usually best not to take antibiotics at all. If the infection is a skin infection or pneumonia and antibiotics are needed the infection the usual antibiotics will usually work because mostly the bug causing the infection is not CPE. If you do go on to develop infection caused by the CPE bug, there are a couple of antibiotics that usually work but they can be complicated to use because they sometimes have side effects. Most people with CPE never get an infection caused by the CPE. If CPE is mostly harmless why are we bothered about it? CPE is mostly harmless because in most people in stays in the gut with all the other gut bugs. In some people the CPE gets into the urine (bladder or kidney), into the gallbladder or surgical wounds or into the blood. This is more likely to happen in people who are already sick with other things. People with cancer on chemo and people who have big surgery are more likely to get sick with CPE because the CPE is more likely to spread into the urine or blood. Why do nurses and doctors wear aprons or gowns and gloves when taking care of me? The hospital staff take steps to help stop them from carrying CPE form you to any other patient. The most important way to do that is to carry out hand hygiene/wash their hands every time after they touch you or your bed space. Sometimes if they are going to be very close to you they may have to wear a plastic apron or a gown to make sure that CPE does not 5

6 get on their uniform and they might wear gloves as an extra step (but they still have to carry out hand hygiene after they take off the gloves). Some patients feel very uncomfortable with all of these extra steps. Sometime people feel that that all these extra steps made them feel like they are dirty or dangerous or as if this was all their fault. No one wants to make you feel that way but the extra care is important to protect other patients and the nurses and doctors are thankful to you for your help and patience. You might carry a CPE that is doing you no harm but it could be very dangerous for some other patient on the ward who is vulnerable or fragile. Why do I have to stay in my room? Why do I have to stay in a special part of the hospital? Why can t I mix with and share things with all the other patients. If you carry CPE the hospital will try to keep you away from other patients especially from patients who do not carry CPE. No one is trying to blame you or make you feel bad. Some other patients on the ward may be very fragile and the CPE could make them very sick. If you can keep to yourself and remember to carry out hand hygiene anytime you need to leave your room that will help the hospital to try to stop the CPE spreading. How does CPE spread? CPE lives in the gut along with billions of other gut bugs. Most gut bugs are good for you. When someone goes to the toilet about half of the faces (poo) that they pass is made up of these gut bugs. The bugs are very very small. Look at the dot on this letter i. It would take millions of gut bugs to cover that dot. This means that even the tiniest trace of poo, even on things that look clean, hands, clothing, furniture can be enough to pass on the CPE bug to another person. For example maybe you touch something that looks clean there is a CPE there that gets on the tip of your fingers. You put your hand to your mouth and you put the CPE in your mouth. Maybe someone else gets CPE on their fingers and then they give you food or medicine and they put the CPE into your mouth. The CPE then goes down into your gut and makes itself at home. CPE is even more likely to make itself at home and multiply quickly if you are already on antibiotics. Although antibiotics are very useful when you need them one of the unwanted downsides of using any antibiotic is that it will kill off a lot of the normal gut bugs. As the normal good bugs dies this makes your gut a better home for CPE. 6

7 How do we stop CPE from spreading. The biggest danger for spread of CPE right now is in hospitals and nursing homes. This is because people in hospitals and nursing homes are more likely to carry CPE and because those people in hospitals and nursing homes who do not carry CPE are more likely to catch CPE. People in hospital and nursing homes are more likely to catch CPE because a lot of them are already sick and may be taking antibiotics. Clean hands (hand hygiene) is the most important thing in stopping spread of CPE. In hospitals and nursing homes it is not good enough that hands look clean. It takes millions of CPE bugs to cover the dot on this letter i. In hospitals and nursing homes carrying out hand hygiene means using alcohol gel or soap and water and carefully following all the steps needed to kill or take away bugs on all parts of the hands. Hospital staff and nursing home staff get training on when they need to carry out hand hygiene when caring for all patients all the time. Nursing home staff need to do hand hygiene for all patients all the time. This not only stops CPE from spreading it stops a lot of other superbugs as well. The other big thing is to make sure that when people pass faces (make poo) that it does not get spread around. If there are tiny traces on the toilet seat, on the commode, on hands, on the toilet roll or on hands this can be enough to spread it. So cleaning and disinfecting the toilet seat is very important. What do the letters CPE stand for. E stands for Enterobacteriaceae. Enterobacteriaceae means a larger family of bugs that live in the gut. You may have heard of one of these bugs called E. coli. E. coli is one of this family of gut bugs but there are many others. C stands for Carbapenemase. The carbapenems are a very important group of antibiotics. The best know example in Ireland is an antibiotic called meropenem. A carbapenemase is an enzyme (a type of protein) that destroys meropenem and other antibiotics like meropenem. P stands for Producer. So CPE is a gut bug that makes and protein the destroys meropenem. So instead of CPE we could say a gut bug that destroys meropenem. Why does it matter if CPE can destroy meropenem? 7

8 Over the past 30 years or more gut bugs (Enterobacteriaceae) have become harder and harder to kill with antibiotics. This means that we have less choice when it comes to antibiotics to treat infection caused by these bugs. Until about 10 years ago one safe antibiotic we could nearly always count on for people with very bad infection with these gut bugs was meropenem. CPE means that we can t count on meropenem anymore and so sometimes we have no safe, easy to use antibiotic to treat infection caused by CPE. Why not use a new antibiotic? There are very few new antibiotics that work against gut bugs. Some drug companies have managed to re-jig some old antibiotics to help a bit. Doctors and scientists are trying to find new antibiotics that work but so far no one has found any really new antibiotic that is ready to use yet. For CPE infection we often end up using old antibiotics that we have known about for years. Sometimes these are antibiotics that are difficult to use and have side effects. How did CPE s appear? In most ways a CPE is like an ordinary gut bug. The difference between and ordinary gut bug and CPE is that a CPE has picked up a gene (a piece of code) that tells it how to make something that destroys meropenem. These pieces of genetic code were always out there in the natural world. Until about 20 years ago we never saw this code in gut bugs. Then hospitals started to use a lot of meropenem to treat infection and then we started to see ordinary gut bugs turn into CPE. There are a few different pieces of genetic code that can turn a normal gut but into a CPE. Each piece of code makes a gut bug into a different type of CPE. The pieces of code spread like a virus from one bug to another. This makes this problem much harder to manage because we not only have to stop bacteria from spreading but we also need to stop the piece of code from spreading. The speed of spread of the code also makes it much harder to track spread of CPE because the code can turn up in the same hospital but in many different types of bug all linked by the spread of this code hopping from one but to the next. When did CPE become a problem. CPEs were first found in different parts of the world in the last 15 to 20 years. Some were first found in Aisa some in America but they may have be spreading for some time before they 8

9 were first found. No one knows for sure where they started. The first CPE that was found in Ireland in was in Every year since we have found more. Can we stop CPE from spreading? Some countries have stopped CPE from spreading and others have not. We can stop CPE from getting out of control in Ireland if everyone works together but it will not be easy, it will not be fast and it will not be cheap. When we put better CPE controls in place we will need to keep them for good because there is always the risk of CPE coming back into a hospital from Ireland or from anywhere in the world. The risk of picking up CPE in hospital is very high in hospitals in some parts of the world. Why are there so many different terms CPE, CRE, NDM, OXA Most of the time the different terms do not matter for most people but the differences can be important for specialists who are dealing with the spread of CPE. This is a short explanation of the differences. CRE stands for Carbapenem Resistant Enterobacteriaceae. E stands for Enterobacteriaceae. Enterobacteriaceae means a large family of bugs that live in the gut. You may have heard of one of these bugs called E. coli. E. coli is one of this family of gut bugs but there are many others. C stands for Carbapenem. The carbapenems are a very important group of antibiotics. The best known example in Ireland is an antibiotic called meropenem. Until a few years ago meropenem killed pretty much all gut bacteria. Se we say that gut bacteria are normally sensitive to meropenem. R stands for Resistant. In the last few years there are more and more gut bugs that are not killed by meropenem we say these are resistant to meropenem and to other members of this carbapenem family of antibiotics. So a CRE Carbapenem Resistant Enterobacteriaceae is a gut but that is not killed by meropenem. When a lab find a Carbapenem Resistant Enterobacteriaceae (a CRE) in a patient sample the next question to ask in is what is it about the bug that makes it resistant to meropenem. There 9

10 are a few different things that can make a bug resistant to meropenem. So the CRE bugs can be divided into different groups. One group of CRE is called CPE (Carbapenemase Producing Enterobacteriaceae). This CPE group is the group we are most worried about because it is these CPE that are spreading rapidly all over the world. What do the letters CPE stand for. ( this is intentionally a repeat of an earlier question) E stands for Enterobacteriaceae. Enterobacteriaceae means a larger family of bugs that live in the gut. You may have heard of one of these bugs called E. coli. E. coli is one of this family of gut bugs but there are many others. C stands for Carbapenemase. The carbapenems are a very important group of antibiotics. The best know example in Ireland is an antibiotic called meropenem. A carbapenemase is an enzyme (a type of protein) that destroys meropenem and other antibiotics like meropenem. P stands for Producer. So CPE is a gut bug that makes and protein the destroys meropenem. So instead of CPE we could say gut bug that destroys meropenem. What is OXA and NDM? This is another piece of the puzzle. This does not matter for most people most of the time but if you want to know this is a short explanation. CPE is a gut bug that makes a protein/enzyme that destroys meropenem. But all CPE are not the same.there are a few different enzymes. The three enzymes that destroy meropenem and that are most common in Ireland in 2017 are called (1) OXA, (2) KPC and (3) NDM. The difference can be important to a team trying to stop CPE from spreading. Suppose there are two patients in a ward called James and Peter. If James and Peter both carry CPE but James has the OXA type of CPE and Peter has the KPC type of CPE then we know that they have different kinds of CPE and the bug did not spread from James to Peter or from Peter to James. If James and Peter both have a KPC type of CPE then we have to wonder if the bug spread from one of them to the other of if they both got it from someone else. Knowing how the bug is spreading can be important in making plans to stop spread. 10

11 How come I got CPE in the hospital but the hospital say there was no one else with CPE on the ward at the time? The first thing to say is that it is very hard to be sure where and when someone picked up CPE because it can stay quietly in the gut and never make you sick or not make you sick for a long time. But sometimes we can say that we are fairly sure that the CPE was picked up during a stay in a particular hospital. If we have a patient that had a couple of tests for CPE and those tests did not find any CPE when they came into the hospital and then a swab later taken later on while they are still in hospital is positive for CPE then the patient probably got CPE in that hospital. This is even more likely to be true if the patient has a kind of CPE that has been known to be a problem in that hospital. Almost always this is because (a) the CPE was carried to that patient on the hands of the hospital staff or else on some piece of equipment such as a commode or a stethoscope or (b) the CPE was in the room /bed space when the patient moved in because the cleaning after the last patient did not get rid of it. If you got CPE on a ward but there was no one else on the ward at the time who was known to have CPE that probably means that there was someone on the ward or in a ward nearby that had CPE but no one knew about it and the CPE got carried to you from that person to you most likely on hands or equipment. 11