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Atrial fibrillation

Sources of information and support for people with atrial fibrillation

With more and more people using the internet, getting information about atrial fibrillation (AF) has never been easier. But the internet is not the only way to find out about AF. Here we look at some of the sources of information and support which people with AF use to help them better understand their condition. 

The internet as a source of information
For those people diagnosed with AF before the internet age, finding out about AF was difficult.
 

Diagnosed over 30 years ago, Elisabeth X recalled how hard it was to get information about AF. She talked about the books her GP suggested she read.

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Age at interview: 74
Sex: Female
Age at diagnosis: 30
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I mean in those days people didn’t talk about this. There wasn’t anybody I could ask about it. I remember my GP, [coughs] who was a very nice and sympathetic man but not one to talk about feelings, coming to see me once because I spent quite a lot of time in bed to start with. And coming with a whole armful of books and jumping, dropping them on my bed and with pieces of paper marking passages and said, “Read these and then you’ll know as much as I do.” 

And also sitting on my bed and explaining that we all had to die of something and it was likelihood it would either be cancer, a stroke or a heart something and really, if you added these three up maybe a heart thing was, [laughs]. It wasn’t exactly reassuring but I think he meant to be reassuring. 

I mean the things that he brought me were these massive great text books [laughs] that nobody in their right mind would want to read.
For most people, however, the internet has now become a key resource for finding out about AF. As Chris Y said, the internet has taken over and ‘encyclopedias and things tend to be a bit old fashioned now’. People we spoke to praised websites run by NHS Choices, the Atrial Fibrillation Association (AFA) and the British Heart Foundation (BHF). However, they stressed the importance of being selective when searching on the internet, noting that websites could have conflicting information. While Carin trusted American websites to have ‘all the latest’ information, Eileen avoided these sites if possible, describing them as ‘very drastic and scary’.
 

Chris Y stressed the importance of comparing information found on other websites as they could sometimes have conflicting information.

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Age at interview: 64
Sex: Male
Age at diagnosis: 62
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Well, I think the NHS stuff online is very good. There’s quite a few others and I usually, well, I’ve printed a lot off. I’ve got a big box file where I’ve printed stuff off, and then you sort of cross reference the different sources. Sometimes they agree, sometimes they disagree and you can you can sort of make your own judgements really about what’s going on. 
 

David Y is selective about which websites he uses. He chooses recognised sites which ‘know their subject matter’ and have patient interests at heart.

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Age at interview: 67
Sex: Male
Age at diagnosis: 64
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I don’t go on one site because, especially if you go onto an American site or a Canadian site, they’ve got they’ve got a different perception and they deal they deal with it in a different, a different manner. But I do compare I do compare site with site, yeah. But I think that the AF and also the British Heart Foundation are probably, probably the two most prominent that I like to use, and you can ask them questions. You can get booklets. You can see what other people say. They’ve got technical people to answer questions online. I think I think it I think they’re fine, and I and I think they’ve not got a vested interest like commercially. That’s the main thing, its people you can talk to who are there for you as a patient and that’s what really, if the national health treated people like AF and the British Heart Foundation, it’d be different entirely. They’re there they’re there for you and also, of course, they know their subject matter. They’re not generalising. They are like concerned about atrial fibrillation, atrial flutter and they can talk to you about what you should do, how you should, you know, you can talk to a dietician, if you like. You can phone up the British Heart Foundation, talk to a dietician. You can talk to a physical, a physical in training guy, tell you what exercises you should be doing, what rehabilitation you should be doing. Everything is there to help the patient. So no, I’m pretty I’m pretty much fine in knowing where to go. I don’t I don’t take a lot of credence from the these sites what have got a vested interest. I mean some of them are very misleading. You think you’re joining a site and the next thing is a, it then talks about a subscription, you know, so they’re not really interested in you as a patient. They’re more interested in taking your money.
 

After searching on an American website, Geoff was convinced he had ‘vagal atrial fibrillation’. His doctors in the UK did not recognise it.

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Age at interview: 69
Sex: Male
Age at diagnosis: 60
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But looking back over, could things have been done differently? There, having looked having got very little advice on it, when it first started, there’s a lot of data on American websites about a thing called vagal atrial fibrillation, which seems to relate to people that play sport like myself do lots of exercise, cycling and tennis and all these sort of things, and I seem to have all the symptoms associated with this so called vagal atrial fibrillation. The GP, the doctors here didn’t recognise it, but what the American conclusions were that if you had this beta-blockers were not a good thing to have, and it would probably make it worse and it might make it permanent. But it’s their view at the time, rightly or wrongly, and the but the medical people here didn’t think that, recognise that. And they said, “What you should have is flecainide.” 
People varied in the types and quantity of information they wanted. Some talked about how they focused on the specifics of their condition rather than going into detail. As Jeni said, ‘you can panic yourself and start thinking it’s worse than it is. I don’t want to overload my brain and wake up worrying at 3am’. Ginny admitted that she was not interested in hospital performance figures, which could be ‘skewed by various things’ but wanted to know ‘about the guy who was going to do the catheter ablation’. Mary spoke of browsing the internet, but declared that she didn’t have time to dwell on her health. Others, like Nuala, however, used the internet more extensively, contacting health professionals throughout the UK for more information ‘if I had good names from the internet’.
 

While Eileen wanted to find out more about the mechanics of AF, she was less interested in going online to find out about lifestyle changes.

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Age at interview: 63
Sex: Female
Age at diagnosis: 53
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Certainly for coping with it, I probably found enough. But I actually wanted to go a lot, personally, I wanted to go a lot deeper because of the hereditary thing and I still do the odd OU course on various health connections. So I was quite interested in finding out a lot a lot more on the mechanics and everything else. But it depends how much you want to know. There are a lot of people on line that I’m in touch with that have gone into things like, you know, how diet can control it and oh, you know, low potassium, which to me personally, is over the top and I didn’t want to go into that much detail. It certainly wasn’t going to rule my life and if I’ve got to take diet supplements and everything else that, no chance. I was on enough pills and potions without doing any voluntarily.
Some participants felt it was important to look up information and become a knowledgeable and informed patient, and to be able to hold a ‘meaningful conversation’ with a consultant. Jenny admitted she had spent ‘all day every day’ researching on the internet after her husband had an AF-related stroke. She said that she found the Atrial Fibrillation Association website helpful, providing information on treatments, specialists and ‘the questions I should be asking’.
 

Martin felt it was important for people to learn about AF on the internet so that they could hold ‘meaningful conversations’ with their consultants.

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Age at interview: 73
Sex: Male
Age at diagnosis: 71
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You’ll find in the Atrial Fibrillation Association, the patients know a lot. They take a very close interest and I rather like the slogan, which has arisen recently, which says, ‘no decision about me without me.’ And that I think is I’m all for patient empowerment, and I think it’s up to us to actually look at the evidence. Fortunately, there’s lots on the web about it. You can teach yourself cardiology [laughs] and how to interpret a, if you’ve got the time and intelligence how to interpret the ECG. And I suppose the doctors have to accept this, that we are we don’t know as much as they do but we can hold a meaningful conversation with them and, you know. 
Other sources of information

Not everyone we spoke to used the internet. As Elisabeth X said, ‘I’ve never knowingly seen a website’. Geoff felt he may have benefitted from looking up information online sooner, but was somewhat dubious of its reliability. Raymond, in his seventies and just starting to learn how to use the internet, wondered what use more information about his condition would be at his age. Dot was happy to leave her treatment up to her doctors, describing herself as ‘not one of these people that goes on the internet and checks everything’. Talking to health professionals, either in person or by phone, helped people get answers to questions about their AF and treatment options. Ginny ‘drove her cardiologist quite mad with questions’. Jeni praised her arrhythmia nurse who she could ‘just ring up anytime’.
 

Gail prefers to speak to her cardiologist, rather than searching for information on the internet.

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Age at interview: 62
Sex: Female
Age at diagnosis: 44
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I feel I have sufficient information, and that if I’ve got questions if I’ve got questions I’d rather actually talk to someone about it, talk to the cardiologist about it than go trawling on the internet because I don’t find that very rewarding. A lot of the sort of patient sites, patient orientated sites tell me what I know already. It’s quite nice sometimes to read about other people’s experiences, but in terms of the sort of knowledge. And I haven’t got the patience to start looking up the kind of medical sources on the internet. I just don’t like using the internet very much. I’d rather be doing something else, so that’s part of the reason. I, you know, I’d rather be doing other things, [laughs] be outside, than sitting at a computer and yeah, if I’ve got questions, I’ll ask the cardiologists about it.
 

As a doctor, Dr Tim Holt needs to keep up to date with the latest developments in AF so that he can help his patients.

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Sex: Male
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It has been tricky for GPs because there has been an awful lot of policy change. There’s been change over recommendations over anticoagulants, over whether we should be screening people for AF, over what the best specialist treatment options are, who we should refer to specialists. So it’s easy to see how GPs have become a little bit confused at times over exactly what the guidelines are saying but there was a guideline published last year, in 2014, which has clarified this and it’s important that GPs keep up to date by reading such guidelines for any updates that occur from time to time. And, of course, we also keep up to date by reading medical journals, attending meetings, listening to specialists and engaging with the patient charities. Arrhythmia Alliance are very supportive of doctors, as well as patients, in keeping everybody up to date.
Textbooks, medical journals, and factsheets provided by health professionals and support groups also helped people understand AF. Some people borrowed textbooks from the library or read articles in recognised journals such as The Lancet to research their condition. When she was put on the list for an ablation, Jeni was sent ‘a really informative pack’ in which the nurse had highlighted relevant information. Ginny, who needed to know the ‘far end of everything’, was given an information pack from the hospital detailing the ‘ins and outs of everything and the risks associated with it’.
 

Before her pre-operation appointment for an ablation, Ginny prepared herself by reading booklets from the hospital and the Atrial Fibrillation Association.

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Age at interview: 49
Sex: Female
Age at diagnosis: 45
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As I say, I’m somebody that has to know the far end of everything. So I’d I contacted the Atrial Fibrillation Association. I contacted the sister, the sister group. What’s that one? Atrial Fibrillation. AFA, atrial fibrillation yes, and I got all the booklets about catheter ablation from the Atrial Fibrillation Association before I ever went into it. I mean the hospitals are very good. They send you out booklets detailing, I think anything to do with the heart, they send you out booklets detailing the ins and outs of everything and the risks associated with it. I was glad I was actually very, very glad I had prepared myself for what was going to be told at the pre-op appointment for the atrial, for the ablation for atrial fibrillation because I think, I can see why the gentleman in front of me possibly, declined the idea of having an ablation because it is quite off putting to be sat there and to be told the facts and figures.
Support groups

Support groups, such as those organised by the Atrial Fibrillation Association (AFA) and the British Heart Foundation (BHF), offered a lifeline for some people with atrial fibrillation (AF). People spoke of the usefulness of leaflets, factsheets, question and answer sections, and booklets available from support groups either by mail or by downloading from the internet. Phone contact provided reassurance and advice. Eileen praised the leaflets available through the Atrial Fibrillation Association because ‘they’re printed in a language that everybody can understand’.
 

Bob found learning about AF from literature available through the Atrial Fibrillation Association helped him communicate with his doctors.

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Age at interview: 66
Sex: Male
Age at diagnosis: 59
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With the Atrial Fibrillation Association and the amount of literature that is available, fact sheets that they provide most people that come into the journey, and AF is a journey, will be able to find out things that I could only have dreamt about finding out. I mean I’ve made it my business to learn as much as I can, because if you are able to communicate with the doctors that are treating you and discuss the problems, you become partners in your treatment. If you don’t do that, you’re just a customer, and that way you don’t get the same results. I found that by being intelligent or by asking intelligent questions, for the most part, I get good responses, and consequently, able to discover why things have happened.
 

Janet explained how the British Heart Foundation had helped her with advice and information through their Heart Matters programme.

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
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I’ve spoken to them once or twice, for some advice and I’ve also been in touch with the local AF association. So I feel that I know enough about AF but I still don’t know what’s the best way to go for the future.

I asked about the warfarin and the cardioversion and expressed some of my concerns and about my other medical problem. And I did feel very reassured that yes, it could work very well for me but also that nobody was going to really push me into having this if it wasn’t something, it was my choice and I felt reassured about that.

I’m always aware that through Heart Matters that they’ve got excellent little booklets and I had I had them on angina. We had them for my husband’s heart problems. So, you know, I’ve and I’ve got a little pack and I pass those around with friends because I just think they’re brilliant. They explain the medicines for the heart and things like that. So I, you know, I know that that information is there if I want to get it.
Online forums, conferences and local support groups offered an opportunity to meet others, share experiences and learn more about AF. A number of people had found conferences, such as those organised by the Atrial Fibrillation Association (AFA), a useful source of information and an opportunity to speak to others about their experience of AF. Anne described the AFA conferences as ‘brilliant’. She said she ‘learnt more from those than I have from any of the doctors’. David X heard about the new anticoagulant medications at ‘symposia for the medical profession’ to which he was invited and ‘patient orientated sessions’ at AFA conferences. (For more see ‘Alternatives to warfarin for atrial fibrillation: the new anticoagulants’).
 

Bob is an active member of a forum set up by the Atrial Fibrillation Association, advising people newly diagnosed with AF. The forum has been a source of mutual support and friendship.

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Age at interview: 66
Sex: Male
Age at diagnosis: 59
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The Atrial Fibrillation Association was formed in 2007 and they set up a forum. It’s not a, it’s through the yahoo groups but you can only join as a member of the Atrial Fibrillation Association, which costs nothing, but you have to go through them. 

When I started on the forum we were up to I think five hundred posts, or something like that, four hundred and eighty, five hundred posts. We’re now into the ten thousand something or other, and I think we’ve probably got, I don’t know how many members we’ve got at the moment. There’s a there’s a hard core of about a dozen of us that look on there most days and every week there’s somebody new coming on saying, “I’ve just been diagnosed. I’m terrified. What’s going to happen? Can somebody help?” And it is important, I’ve I consider it important to me to look on there every day, sometimes two or three times a day, because having been there I know what they feel like, and I don’t want them to feel like that. So if I can go on and say, “Yeah, okay. This is the situation. I have greatest sympathy for you. I’ve been there. I do know where you’re coming from, but try and relax.” And signpost them, look on the forum. Look on the main website, and there is a fact sheet on anti-coagulation. There is a fact sheet on ablation. There’s a fact sheet on drugs. There’s so much information there now that wasn’t available when I was first started out on the journey, and it’s not all technical. It’s not all there’s a there’s a certain amount of banter and innuendo between some of us old stagers that are on there, there’s a sort of hard core. A lot of them I’ve met at conferences and we’re quite good friends and occasionally, there’s one lady if we’re up in London for a meeting or something, we’ll have dinner in the evening before we go our separate ways. We all, there’s a there’s a group of us known as the pink carnation gang who meet up at the conferences and wear a pink carnation to be recognised, and always try and sit together and so on and so forth and it’s nice. It’s a sort of mutual supporting group. We care about each other, which is important.
 

For Geoff, chatting to people about their experiences at Atrial Fibrillation Association meetings was more useful than searching the internet.

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Age at interview: 69
Sex: Male
Age at diagnosis: 60
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I probably should have looked at the internet more but then you felt, well, it’s all sort of quacky ideas and perhaps a bit eccentric people putting stuff on, and was it really genuine stuff. So I didn’t tend to bother to look very much. The recent meetings we had at the Atrial Fibrillation Association, we’ve just had two and one about two months ago and one a year previously, and that was really useful and for the first time, I, yeah, probably the first time, I’ve met patients that had the same thing. And one of the great things about that is you can chat to people that have had the same experience, and you suddenly find you’re not alone and a lot of people are far worse than you, and a lot of people just, you know, go for it with extraordinary, foolhardy in some ways, it seemed to me, on occasions. Just going on holidays and then suddenly ending up in a heap on the floor in a hotel room in Paris, can’t speak a word of French, you’d have thought it was rather a crazy thing to do but they got through it and they survived and they’re there to tell the tale [laughs]. But, yeah, I think I thought I found that quite helpful, and then you could ask consultants there, not that I couldn’t talk to my own consultant, but there are other people that were independent of your own experience, you could ask questions. And yeah, I found that quite helpful.
 

Eileen keeps up-to-date with new treatments at annual Atrial Fibrillation Association conferences. Local groups offer a chance to meet other people.

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Age at interview: 63
Sex: Female
Age at diagnosis: 53
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There’s the annual, what they call the arrhythmia conference, which is in Birmingham once a year and there’s several different sorts of arrhythmias have their own branch but the atrial fibrillation does and they have consultants and they try and give you something from a patient’s point of view. Some of the consultants come and give you what the new treatments are, what the new drugs are, you know, what your options are. Then there is there’s another there’s another conference, which is Europe AF I think but that actually is a medical conference for which they invite the patients for one day and as I say, there’s the one in Birmingham. The one in Birmingham is actually a five day conference designed at you know, the cardiologists and things but the patients come in on one day.

So they do that. They also have various groups or, you know, people set up groups, local groups. I haven’t actually got into one. I keep trying to so, of us, I was going to say I suppose it’s a bit like Alcoholics Anonymous. It isn’t because they have they get, you know, arrhythmia nurses to come and talk and dieticians and it also gives you a chance to meet other people. That was the biggest thing with AF was the Atrial Fibrillation Association when I found it, was realising there were other people my age going through the same thing.
Not everyone had access to a local support group, however. Although Nuala has attended meetings in the city, this is ‘too far away from home’ to go regularly. Glyn is not aware of any support groups in his area. Carin felt she would benefit from being able to meet others with the condition if there was a local support group. Vera would be happy to ‘talk to other people’ about her experiences of AF if she had free time, but was not aware of the existence of any nearby groups.
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