AFA Issue 2 - September 2008 by www.heartrhythmalliance.org

September 2008 Issue 2 Providing information, support and access to established, new or innovative treatments for Atrial Fibrillation

Atrial Fibrillation Association joined Arrhythmia Alliance to promote Arrhythmia Awareness Week Atrial Fibrillation Association PO Box 1219 Chew Magna BRISTOL BS40 8WB UK www.atrialﬁbrillation.org.uk +44 (0)1789 451 837 Info@atrial-ﬁbrillation.org.uk Registration Number: 1122442 ©2008

Children at a Somerset school release balloons for AAAW!

Running from 9th – 15th June, this year’s Arrhythmia Alliance Awareness Week (AAAW) saw hundreds of events take place across the UK. For AFA this was a first, and a welcome opportunity to raise awareness of Atrial Fibrillation, the most common heart rhythm disorder with more than 500,000 patients diagnosed in the UK, and an estimated 200,000 new AF patients being diagnosed annually. Members joined in from Scotland to London, distributing information packs to local medical centres, distributing patient information booklets, manning awareness displays, facilitating ‘Feel the Pulse’ one stop clinics and even initiating sponsored events! www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 1

The week began with the launch at

the impact AF has had on his life,

joined with clinicians from across

Portcullis House, London, where

his job and his outlook, and why

Europe and together learned more

Members of Parliament, patients,

he felt greater awareness and

about Atrial Fibrilliation.

carers, members from Arrhythmia

understanding was needed in order

Alliance (A-A) afﬁliated groups,

for the patient to feel supported and

The morning session welcomed

medical professionals and industry

cared for, rather than ‘processed’.

four

patients

who

each

year

gave an insight into the impact

of AAAW. Together all listened to

of AF on their lives, management

presentations by Professor Roger

of numerous tablets, struggling

Boyle CBE, National Director for

with side affects, coping with

Heart Disease, Professor A John

employment, and, in some cases,

Camm, Head of the Department

experiencing

of Cardiac & Vascular Sciences

treatment.

met to celebrate the 5

catheter

ablation

at St George’s and Trustee of AFA, Mrs Trudie Lobban, CEO

Each

of A-A and AFA and Mr Thomas

expressed

Hall, an AF patient who has

loneliness they experienced living

recently

with AF. Comments included how

undergone

successful

catheter ablation treatment.

patient the

presenter

frustration

and

life now seemed to be ‘in the slow lane’. For Gerard, AF = Alone and

Professor A John Camm

Frustrated;

“Feel supported and cared for rather than processed’’

while

for

Stephen,

diagnosed with AF six years ago, he summarised the affect of his successful catheter ablation by commenting, “I realise that since the success of my second catheter ablation, I feel well for the ﬁrst time in six years, after so long, laughter has at last returned to our home.’’ Fellow patients, carers, physicians and interested members all listened, seeing for the ﬁrst time AF patients

Professor Roger Boyle

sharing a platform with clinicians. The

event

gave

AFA

opportunity to launch the new

Thank you to all those who took

patient

part in AAAW, if you would like to

information

booklets

(available free to all members), and for everyone present to listen to

an AF

patient

–

become involved in awareness Mr Thomas Hall

events

Thomas

would

information on how you could help,

Hall, recall his experiences of living

A busy week ended in magniﬁcent

with Atrial Fibrillation.

style with the ﬁrst AFA Patient

Thomas eloquently summarised

please contact:

Day being held in conjunction with

Info@atrial-ﬁbrillation.org.uk

Europe AF. AF patients and carers

telephone Jo: +44 (0)1789 451837.

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 2

Tel: +44 (0) 1789 451 837

Raising Awareness and Fund Raising for AFA! Jane’s husband was diagnosed as having Atrial Fibrillation at the beginning of 2008. shock – and ﬁnding out reliable information was even more of a challenge! So when AFA being involved in Arrhythmia Alliance Awareness week, she was keen to become works as an Occupational Health Advisor, and so decided to use her medical skills to pulse check one stop clinic:

4th June – All staff offered BP and pulse checks at the Oatwell College, it is only small but 15 staff attended for this.

It came as a Jane heard of involved. Jane run a BP and

71 staff attended for this over the 2 days. 3 people were advised to see their GP, one of whom has been confirmed as having AF and currently being investigated.

9th and 10th June - Display set up at Motherwell College. Leaflets, posters, patients educational literature. Stand manned for part of both days. Over 100 people attended the display whilst it was manned.

To date 12 more staff have heard about the campaign and have requested BP and pulse checks– looks like an ongoing demand. This will now form part of any screening I do with the addition of Cholesterol checks for health assessment.

9th and 10th June - As I am the Occupational Health Advisor, all staff were offered a Blood Pressure and pulse check.

Survey completed by 60 staff members

However, despite this being extra to her normal weekly work, Jane still found time to sign up for a 10k sponsored walk and as a result raised £200 which she has kindly donated to Atrial Fibrillation Association! At the end of the packed week Jane’s comment was, ‘’I was exhausted but it was well worth it!’’ AFA would like to thank Jane for her amazing contributions to AAAW and AF.

Raising Awareness of Atrial Fibrillation World Wide!

Jane - who ran a ‘One Stop Pulse and BP Check Clinic’ at her local college.

Frances delivered packs to all surgeries in her area!

AAAW launch held at Portcullis House.

www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 3

AFA information distributed as far and wide as India, Italy and Indonesia!

You too can become involved! Order copies of the new AFA Patient Information booklets, approved by AF medical specialists and endorsed by the Department of Health, to distribute at local GP surgeries or your cardiology department.

AFA has a range of patient information booklets available. To order your free copy please complete and return the form below: Please tick the booklet(s) you would like to receive:

Providing information, support and access to established, new or innovative treatments for Atrial Fibrillation

Atrial Fibrillation (AF) Patient Information

ATRIAL FIBRILLATION (AF) DRUG INFORMATION

Providing information, support and access to established, new or innovative treatments for Atrial Fibrillation

Providing information, support and access to established, Providing information and access toFibrillation established, new or innovativesupport treatments for Atrial new or innovative treatments for Atrial Fibrillation

Primary Checklist Atrial Care Fibrillation Checklist

Providing information, support and access to established, new or innovative treatments for Atrial Fibrillation

Blood Thinning In Atrial Fibrillation

ELECTRICAL CARDIOVERSION FOR ATRIAL FIBRILLATION

Blood Thinning for AF

Electrical Cardioversion

www.atrialfibrillation.org.uk www.atrialfibrillation.org.uk brillation.org.uk www.atrialfibrillation.org.uk www.atrialfi Tel: +44 +44 (0)1789451 451837 837 Tel: + 44 (0)1789

Patients Information

Drug Treatments for AF

□

Primary Care Checklist

□

Your Full Name:

□

Title:

Address: Post Code: Telephone Number:

Email Address: Please send me one copy of each booklet ticked Please send me an AFA distribution pack

□ □

Return to: AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB or email: Info@atrial-ﬁbrillation.org.uk Medical Professionals wishing to order AFA information booklets, including ‘Top Ten Tips’, please contact info@atrial-ﬁbrillation.org.uk for full details.

Join AFA at Arrhythmia Alliance Regional Meetings Venues for 2009 will include • • • •

North West Wales The South West London

• • • •

North East Northern Ireland The Midlands Scotland

The Heart Rhythm Charity Promoting better understanding, diagnosis, treatment and quality of life for individuals with cardiac arrhythmias

To register an interest in receiving further details of the 2009 venues, please complete the registration form below: Title: ...............................Name: ............................................................................................................................. Address: ................................................................................................................................................................. ........................................................................................................................................................................................................... ........................................................................................................................................................................................................... Contact Telephone Number: ........................................Email Address: ................................................................. Are you a:

Patient

Carer

Health Care Professional

Other (please state)....................................

Post Your form to: AFA PO Box 1219, Chew Magna, Bristol, BS40 8WB, UK AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 4

Tel: +44 (0) 1789 451 837

How have Advances in Medical Technology Contributed to the Treatment Atrial Fibrillation? Donna Elliott-Rotgans, Cardiology Service Manager, The Heart Hospital / UCLH London; Mike Galloway, St Jude Medical UK, highlight developments in ‘Advanced Mapping Systems’

“A deﬁning moment in providing a permanent therapy and abolishing the rhythm abnormalities” The study of abnormal heart rhythms dates back to 1887 when it was ﬁrst demonstrated that electrical signals formed the basis of heart activity. At this time abnormal heart rhythms could be recorded and drug medication was the only treatment to help reduce episodes or symptoms.

First heart rhythm recording. A.D Waller 1887

undergone catheter ablation (placing a special catheter inside the heart to selectively heat the abnormal tissue) for their heart rhythm abnormalities. This was a deﬁning moment in providing a permanent therapy and abolishing the rhythm abnormalities so that the heart would beat normally. Today more than 11,000 ablation procedures are performed per year in the UK alone.

Atrial Fibrillation is known to be a troublesome, complex and less predictable abnormal rhythm. This has meant that the physician needs a greater understanding and visibility to the heart’s anatomy and electrical activity.

“Has an accuracy to the nearest half millimeter”

Latest CoolPath ablation catheter that irrigates saline to improve control and reduce risk

Soon after it was shown that catheters with listening electrodes could be placed inside the heart safely whilst accurate electrical recordings could be made to identify the cause of the abnormal rhythm.

with ablation were called Supraventricular tachycardias, those which are somewhat predictable and their causes known.

An ablation procedure requires the use of an x-ray machine and also a computer system to record the electrical signals.

In 1998 Michel Haissaguerre et al published a seminal paper demonstrating the ability to treat Atrial Fibrillation using similar catheter ablation techniques. During the late 1990’s the development of advanced mapping systems has contributed signiﬁcantly to the increasing efﬁcacy of Atrial Fibrillation Ablation.

A basic electrical recording from inside the heart X-ray image of diagnostic catheters inside

In 1982 Scheinman et al published the ﬁrst series of data on clinical patients who had

the heart recording electrical signals

The ﬁrst rhythms to be treated

Three

dimension

heart

anatomy

and

electrical

(EnSite NavX, St Jude Medical)

www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 5

reconstruction

the

events

“Development of advanced mapping systems has contributed signiﬁcantly to the increasing efﬁcacy”

around the United Kingdom, and the number continues to grow each year.

“More control and less risk”

Technology has contributed to the provision of more control and less risk when performing ablation procedures. Continual advancement of technology improves our understanding of the

An Advanced Mapping system has the ablility to recreate an accurate three dimensional image of your heart. This image is so accurate that it means the physician can effectively ‘see’ inside your heart and accurately ﬁnd the abnormal tissue causing your Atrial Fibrillation. This also helps to reduce the amount of X-rays that the patient and the physician are exposed to. It also has an accuracy to the nearest half millimeter for ﬁnding those abnormal areas. There are estimated to be around 3000 Atrial Fibrillation ablations performed in cardiac centers

A Fusion of CT/MRI imaging and three dimensional mapping (EnSite NavX, St Jude Medical)

Newer technologies now allow the physician to fuse three dimensional CT or MRI scan images with mapping images as a basis for visualising your heart structure. Combining these accurately with the electrical information provided by the advanced mapping system and electrical catheters.

mechanisms of Atrial Fibrillation and the selection and delivery of the most appropriate therapeutic solution for the patient. For more information contact your General Practitioner or Cardiac Electrophysiologist.

Sign up now, membership is free and open to everyone. All messages are moderated and members are automatically notiﬁed by e-mail when replies and new topics are posted. “You have given me useful things to think about and less to worry about. I will certainly stick around”

Atrial Fibrillation Notice Board With regular postings and world wide membership the moderated AF Notice Board welcomes all new members. From questions to sign posting, laughter to a shared story, the moderated board offers support and reassurance that you are NOT alone in managing life with AF.

-Mark “Thanks for listening, I really needed to get this off my chest.” -Edna

To sign up follow the ‘FORUM’ links on the AFA website: www.atrialﬁbrillation.org.uk AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 6

Tel: +44 (0) 1789 451 837

How the right doctor helped my wife and me by AFA member, Peter Peter and Joan

Having been in permanent AF and taking medication since I was diagnosed in January 2004, I found that the breathlessness and fatigue which I had lived with since then got a lot worse in September 2007. It was so bad that I had to take time off work and at the present time (June 2008) I am just about to start a phased return to work.

understood the pros, cons and success rate for someone in my position. He asked where I felt I was at, but he was in no way pushing for me to have the procedure. I felt comfortable enough to say to him that since my medication had been changed in recent months, and the breathlessness and fatigue had greatly reduced, I would like to wait and see how things go when I go back to work and start teaching again.

In November 2007 I saw a cardiologist and six months later I was referred to a specialist called Dr Hussain at Hareﬁeld to discuss an ablation procedure.

Dr Hussain’s response was absolutely fantastic. He said that in this case he would Dr Hussain was superb. discharge me, but that I “We were so relaxed, He straight away put my could feel free to contact encouraged and really as high as wife and I at our ease. him in writing at any time in He was professional, but kites at such a super consultation the future, to either discuss also friendly and showed the situation further or to ask with an excellent consultant.” interest in what we had to have the procedure. He to say. He was very willing to discuss the said that I would not need to go through any medication I was on and clearly explained how referral system again. each heart medication was being used. He wanted My wife and I both left that consultation feeling to make sure that he knew where we were coming absolutely fantastic. We were so relaxed, from before he even tried to discuss the procedure. encouraged and really as high as kites at such a Having established where we were at, he then super consultation with an excellent consultant. asked if he could now do his bit to explain about the It shows just what a difference a caring procedure. He was asking our permission to move professional electrophysiologist, who is happy on!! His explanation was clear and precise. He to share information on the centre’s catheter willingly talked about what the procedure involved, ablation sucess rates, and who really does seem their success rates, and he outlined the follow up, to understand what living with AF is like, can make so he had up to date statistics on success rates. to a patient dealing with a condition he/she has Having done this he willingly answered other had to live and struggle with for a number of years. questions we had and made sure that I fully Peter (Northampton) www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 7

Portable, cordless single-channel ECG Monitor HCG-801-E

Screening & self-monitoring of cardiac arrhythmia

A new alternative in ECG monitoring HeartScan is a compact, patient operated, handheld device, designed to record 30 seconds of ECG data. HeartScan is simple for patients to use. It has an easy to read LCD screen, 300 trace on screen memory. The device is also suitable for use in all primary and secondary care environments providing a solution for those difﬁcult to diagnose cardiac complaints at an affordable price. It offers the opportunity to effectively screen large patient populations reducing referral rates and costs.

For further information, please contact: OMRON HEALTHCARE (UK) LTD Opal Drive, Fox Milne Milton Keynes MK15 0DG tel: 0870 750 2771 fax: 0870 750 2772 email: info.omronhealthcare.uk@eu.omron.com www.omron-healthcare.com

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 8

Tel: +44 (0) 1789 451 837

Leeds Rapid Access Atrial Fibrillation Clinic by Shona Holding

Nurse Led Rapid Access Atrial Fibrillation Clinic LTHT

ONE STOP Arrhythmia specialist nurses Chapter 8 of the National Service Framework for coronary heart disease, published in 2005, advocates that anyone presenting with an arrhythmia in both an emergency and elective context receive timely support, information and assessment by an appropriate clinician to ensure accurate diagnosis and effective treatment. In the light of this, two arrhythmia nurses in Leeds, Shona Holding

and Keith Tyndall, decided to address the management of atrial ﬁbrillation (AF). AF is an arrhythmia that affects 1-2% of the general population and is a major cause of stroke. This is largely a preventable cause and if treated promptly with anticoagulation therapy the risk of stroke is signiﬁcantly reduced.

Strokes due to AF are more severe than other strokes and the prognosis is poor. The risk of stroke is highest soon after the onset of AF therefore prompt detection, diagnoses and treatment is essential. The nurse led project of setting up and running a rapid access one stop AF clinic, was supported by hospital cardiologists;

Keith, Shona and Craig – the arrhythmia nursing team

Shona in clinic with an AF patient

www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 9

Outcomes of the clinic After one year the Leeds team collated and compared data with that collected pre establishment of the Rapid Access AF clinic. Results were amazing - with the patient now being able to receive prompt assessment followed by timely and appropriate treatment. • Patients are seen within 14-20 days of referral compared to 8 weeks for cardiology. • All necessary diagnostic tests carried out on same day aiding quick diagnoses. • 49% of all patients attended so far showed a new abnormality on echo, 25% of these assisted with the decision to commence warfarin.

More members of the team who help towards making the new Rapid Access AF Clinic of such beneﬁt to AF patients

while meetings with the outpatient manager, administrative staff and diagnostic teams enabled them to coordinate clinic space, referral process and allocated slots in the diagnostic departments. A referral criterion was agreed and a referral form designed to provide the maximum information for the clinic. It is published on a web page accessible to all GPs where it can be downloaded, completed and faxed to a designated number. Patients are telephoned with an appointment date followed up with a letter and arrhythmia alliance or AFA information booklet on AF. Patients are seen within 10-15 days of referral at the one stop clinic, meaning all necessary diagnostic tests are undertaken during one hospital visit. During the 30 minute appointment, the nurse takes a detailed history, clinically examines the patient, makes deﬁnitive diagnoses and discusses treatment options with the patient. Cardiologists provide clinical supervision at each clinic.

The patients are given patient AFA/AA information leaﬂets and contact details of the arrhythmia nurse who can be contacted if a patient has any further questions or queries. The treatment plan is also sent to the patient’s GP in order to ensure all parties involved are kept informed. In July 2008, Shona, Keith and the Leed’s team were awarded a “Highly Commended” for “Improving Patient Access” at the Leading Edge Awards. AFA add their congratulations to the Leed’s team and welcome their innovative initiative!

• 35% of patients in AF were asymptomatic and 45% of them were at high risk of stroke and commenced warfarin. • 80% of all high stroke risk patients commenced on warfarin. (20% contraindicated) • All patients receive individualised stroke risk assessment and treatment counselling. The data was further supported by numerious testimonies from AF patients, carers and local GPs: ‘My patients are seen really quickly’ GP ‘Everything was done before he was critically ill’ Patient’s wife ‘The excellent organisation and commitment to patient welfare shown by the arrhythmia clinic was of exemplary standard……… at all times we felt secure and conﬁdent that we were receiving the best possible care and attention’ Patient letter

Highly Commended in the ‘Leading Edge Awards’

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 10

Tel: +44 (0) 1789 451 837

Providing information support and access to established, new or innovative treatments for Atrial Fibrillation

Atrial Fibrillation Checklist

Introduction If you have been diagnosed as suffering from Atrial Fibrillation or Atrial Flutter, it would be very useful to your doctor if you would fill out this checklist which is designed to provide your doctor with some of the information that may be needed to choose the best treatment for you. Atrial Fibrillation and Atrial Flutter are common heart rhythm disturbances which may produce symptoms such as palpitations, breathlessness, chest pain and tiredness. In some patients the rhythm disturbances may result in complications such as heart failure (sluggish beating of the heart) or sometimes stroke. There are many different and important treatments for atrial fibrillation and atrial flutter which are very effective, preventing the symptoms and the complications of the condition. The right choice of treatment depends in part on accurate information from the patient. This checklist is intended to help to provide that important information to your doctor. It would be very useful to fill this out before visiting you doctor. Do not worry if there are any technical terms you do not understand – just put a question mark (?) What is your name?

...........................................................................................................

Date of Birth:

............... / ............... / ...............

What is your gender?

Male

Female

Yes

When (date)

...................... ...................... ...................... ...................... ...................... ...................... ...................... ...................... ...................... ...................... ......................

...................... ...................... ...................... ......................

Do you suffer from any of these symptoms? Palpitations lasting more than 2 seconds Irregular Fast Breathlessness With palpitations On exercise Chest pain With palpitations On exercise Tiredness Ankle swelling

Have you had any of these medical conditions or procedures? Heart Attack High blood pressure Heart failure Thyroid disturbances Diabetes Stroke or TIA Heart surgery Electrical shock treatment for your heart Ablation treatment Pacemaker implantation ICD implantation

...................... ...................... ...................... ...................... ...................... ...................... .......................

Have you been given a definite diagnosis of: Atrial Fibrilliation?: Atrial Flutter?: Both?:

Yes Yes

Yes

No No

Since When: ...........................

Since When: ........................... Since When: ...........................

Is your rhythm problem... Occuring as attacks? Present at all time?

Yes

Since When: ............................

Have you been treated with any of these medicines? Sotalol Flecainide Propafenone Amiodarone Digoxin Beta blocker Calcium blocker Warfarin Aspirin

Yes Yes Yes Yes Yes Yes Yes Yes Yes

No No No No No No No No No

Since When: ........................... Since When: ........................... Since When: ........................... Since When: ........................... Since When: ........................... Since When: ........................... Since When: ........................... Since When: ........................... Since When: ...........................

Are you currently being treated with any of these medications? Sotalol Flecainide Propafenone Amiodarone Digoxin Beta blocker Calcium blocker Warfarin Aspirin

Yes Yes Yes Yes Yes Yes Yes Yes Yes

No No No No No No No No No

Have you seen another doctor about this condition? When (date)

Yes Yes Yes Yes

GP / Family doctor

Yes

Casualty doctor Hospital doctor Cardiologist Rhythm doctor

No No No No No

Have you had any of the following tests? If you have any results at home, please bring them to the clinic When (date) Resting ECG

Yes Yes Yes Yes Yes Yes Yes

Exercise ECG Event ECG monitor Implantable ECG monitor Echo scan of the heart Thyroid function blood test Other Blood tests

No No No No No No No

............................................... ............................................... ............................................... .............................................. ............................................... ............................................... ...............................................

Do you have a copy of your ECG? If you do please bring it to the clinic When (date) When normal

Yes Yes

When rhythm abnormilty is present

No No

............................................... ...............................................

ECG = electrical tracing of your heart beat Beta blockers = propranolol, atenolol, metoprolol, bisoprolol and other drugs ending “olol” Calcium Blockers = verapamil or diltiazem TIA = transient ischemic attacks

PO Box 1219, Chew Magna, Bristol, BS40 8WB, UK Tel: +44 (0)1789 451 837 Email: info@atrial-fibrillation.org.uk The Heart Rhythm Charity

Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk

Please remember these are general guidelines and individuals should always discuss their condition with their own doctor.

endorsed by

Published April 2008

Arrhythmia Nurses recognised for their pioneering work North East Wales NHS Trust’s Arrhythmia nurses Michelle Bennett and Erica Longster were awarded second place in the National Cardiac Nursing Awards for ‘Excellence or Innovation in Arrhythmia Care’ Too often the work of Nurses passes unnoticed, Michelle explain to AFA project has helped AF Wales and won them

treatment to restore the heart back to a normal rhythm (cardioversion) or medication to control the patient’s heart rate.

“A proper assessment to measure the patient’s risk of stroke is also undertaken”

Arrhythmia Specialist but here, Erica and how their innovative patients in North national recognition!

AF can result in stagnation of blood in the heart, increasing the risk of blood clotting, which may result in a person suffering a stroke. A proper assessment to measure the patient’s risk of stroke is also undertaken after detection of AF, and the patient is then able to be advised about the most appropriate medication to reduce their personal risk.

“The checking of manual pulses has now been introduced” Michelle and Erica have spent the past year working in collaboration with the Wrexham and Flintshire Local Health Boards (LHB) in developing a system for screening for Atrial Fibrillation within Primary Care (ie, in GP surgeries).

After a diagnosis of Atrial Fibrillation has been made at the surgery the GP or practice nurse can refer the patient to the arrhythmia service in the Hospital; here a patient is assessed, given information about AF, support and even counselling to help them manage their condition. Following this, an individualised management plan for their condition can be devised.

Atrial Fibrillation (AF) is the most common form of arrhythmia (a disturbance in the heart rhythm), and can often go un-diagnosed. A very simple way of detecting this irregular heart rhythm is by checking a manual pulse (a pulse taken usually at the wrist by a health care professional and not an This process is not automated machine). exclusive to patients With this in mind, the from the Primary Care checking of manual setting, but is also pulses has now been open to hospital introduced in some based patients who practices in Wrexham are referred into and Flintshire as a their services, and standard part of a GP Michelle and Erica visit for many patients hope that in time all with chronic illness surgeries in their (such as diabetes, NHS trust will adopt Erica and Michelle and high blood this system. pressure), even where no cardiac problems AFA would like to congratulate Michelle and have been identified. This will allow for patients Erica on their work, success and achievement. with this condition to be identified early and preventative measures taken, such as electric www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 15

Following publication of further clinical trials on new catheter ablation tools, Dr Edward Rowland President of HRUK and Consultant Cardiologist at The Heart Hospital explains

What is Catheter Ablation and how might new data benefit an AF patient? The theory behind ablation of AF is relatively simple. Destroy the source of those rapid impulses, interrupt the pathways along which they travel, or both, and the heart will no longer support AF. The problem however has always been identifying and gaining access to those specific areas of the heart. The early pioneers of cardiac ablation used surgery. In an open-chest procedure, incisions were made in both left and right atria to interrupt pathways maintaining AF. While this was effective, it was a very challenging procedure for both patient and surgeon and very few patients were deemed so severely affected for surgery to be warranted. In more recent years, new information emerged about AF. Doctors had believed AF originated within the walls of the atria (the upper chambers of the heart), but compelling new evidence from European researchers found that many forms of AF originated not in the atria, but in the pulmonary veins. The pulmonary veins (PV) are four large blood vessels which connect to the left atrium, carrying blood from the lungs into the heart. Discovery of this led to a new concept for ablating AF and asked the question, ‘Could physicians access the PVs by using a catheter (small wire) inserted into a vein to perform the ablation?’ Medical advances like this often start with simple ideas that then have to be rigorously tested in clinical situations. Before this could even commence, one of the first things that was needed was superior technology. Ablation catheters for the heart

already existed, but none were intended for speciﬁc use in the area of the PVs. Over the past decade new styles of catheter tools – varying in design have been trialed. Highly regulated studies called ‘clinical trials’ have had to be conducted to observe how these products worked in “real life.” Almost all medical studies look at two different things. The ﬁrst is the safety of the product. For a medical researcher, safety means that the product does no harm and is not associated with excessive risk of complications. Meeting HRS HRS Cardiostim

Lead Author Boersma Dang Weber

No. of patients 85 123 12

little more than the size of a hair. Most of these can be destroyed (ablated) with a small catheter placed at one site. Catheter ablation to isolate PVs requires considerably more tissue ablation. Performing the procedure can be extremely time consuming. In fact it was not unusual for an AF ablation to take four to six hours. While physicians are willing to spend the time it takes to do a procedure properly, it is easy to see that if a hospital could ﬁnd a safe and effective procedure that required less time, it could offer the procedure to more patients.

Safety (complications) 0 0 0

Efficacy 80% 80% 75%

Procedure Time (minutes) 85±32 126±36 84±9

Table 1: Studies of catheter ablation for patients with paroxysmal AF

The other thing that clinical trials study is efficacy (how efficient it is at working in the patient to whom it is given or used upon). A device is efficacious if it does what its manufacturer claims that it can do. In PV Catheter Ablation efficacy is defined by how well it can be used to isolate the PV. But the important measure of efficacy is whether the patient has any more AF. While efficacy sounds like something that is fairly easy to obtain, it is almost impossible for any drug or device to be 100 percent efficacious. Catheter ablation established its reputation as a very effective treatment during the 90’s when it became the treatment of choice for rhythm problems called SVT (supraventricular tachycardia). The culprit in this condition is usually a single small extra piece of tissue in the heart,

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 16

Recently a number of studies involving 338 AF patients have looked at the safety, efficacy and procedure time for one range of new catheter tools developed by Ablation Frontiers. It is important to remember that the data only shows short term results (less than six months follow up) so currently we await follow up data in order to consider if any complications or issues arose within the first year and beyond. However, subject to this, the early data does look beneficial for AF patients and clinicians. The products were most recently trialed in patients with paroxysmal AF in three distinct studies. Paroxysmal AF is the form of AF which starts abruptly and terminates on its own and may be accompanied by a very high degree of symptoms. It can be very

Tel: +44 (0) 1789 451 837

Meeting HRS ACC Cardiostim

Lead Author Michaud Scharf Dang

No. of patients 20 53 45

Safety (complications) 0 1 0

Procedure Time (minutes) N/A 128±N/A 162±36

Efficacy 75% 79% 78%

Table 2: Studies of catheter ablation for patients with chronic or permanent AF

uncomfortable,

new

technology

from

Ablation

Frontiers. The efﬁcacy rate was around 80 percent, meaning that there was

the form of AF that is most responsive

either Persistent or Permanent AF.

no more AF in 80 percent of those

to medical intervention.

The centers published results for a

patients. In all of those patients, there

total of 53 patients; there was one

was only one reported complication,

It is still the case that catheter

complication reported and an efﬁcacy

which would work out to a complication

ablation is better suited for patients with

rate of 79 percent and procedure time

rate of about 0.3 percent.

paroxysmal AF. Until recently more

of 128 minutes. Two other studies have

advanced forms of AF, such as

been presented on similar patients

These are very encouraging ﬁndings.

persistent

long-standing

(illustrated by the following table).

However they need to be interpreted

persistent AF (also called chronic or

A common statistical technique used

with caution. The follow up is short

permanent AF), were not deemed

by clinicians to help encapsulate

and we need to see that these

suitable

ablation.

the “big picture” from many small

promising results are maintained.

However these tools were initially

studies involves merging data from

they are, we have the tantalizing

designed to treat these forms of AF,

comparable studies into one table.

prospect of being able to undertake AF

and have helped to demonstrate

These data are by no means as

ablation more quickly, more often and

that even AF which has persisted for

precise

more effectively.

months or a few years can be treated.

studies, but they do give a good

Five centers from three European

summary, as shown above (Table 2).

candidates

catheter ablation using the innovative

trials of this equipment for treating

and

338 patients with AF underwent a

actually

but

Reviewing these six studies (Table 3),

for

data

from

speciﬁc

nations were involved in the clinical

Arrhythmia

2008 Publication / Meeting HRS Presentation

Paroxysmal

HRS Presentation

Cardiostim Presentation

JACC 2008

1º Author / Speaker

SIZE: n

L Boersma

SAFETY: SAE

EFFICACY:

Procedure TIME:

Proc + 7days

3d or 7d ECG @ 6mo

80%

85 ± 32

L Dang

132

80%

129 ± 36

S Weber

75%

84 ± 9

C Scharf

79%

128 ± N/A

G Michaud

75%

N/A

L Dang

78%

162 ± 36

338

1 (0.3%)

~80%

84-155 min

Minutes

Poster

Chronic / Permanent

HRS 2008 Poster

Cardiostim Presentation

TOTAL

Data Shown is from Presentations and/or Posters, not Journal Supplements

Table 3 www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 17

“AF is more than just palpitations” A Patient’s Perspective My Name is Sam, I am 50 years of age and I work in the computer industry. My work involves a considerable amount of travel, in a typical week I can easily drive around 800 miles visiting clients. I ﬁrst displayed the symptoms associated with AF in 2001, and for me the symptoms originally consisted of palpitations, general shortness of breath, and fatigue which was not improved by rest or sleep.

“The heart occupies a special place in our consciousness” I believe very strongly that my AF was directly related to work place stress, my post at the time had been deleted from the organisational structure and I had a formal offer of redundancy. I was 43, had a young family and serious financial commitments. It was a very worrying time, in addition to the blow to one’s confidence and self esteem, I had worked in the public sector since leaving school at the age of 17, this was a very big change for me. I had wrongly assumed that when I left and the stress levels dropped, not only would I start to sleep and eat normally again but the heart related symptoms would also stop. However AF had other ideas and my symptoms and problems today are a legacy from that time. Paradoxically I am not the sort of person who likes to discuss my medical issues with friends, colleagues or even family. I have tried to keep my condition confidential; my parents, for

example, are unaware that I have been living with a heart problem for the last seven years. This in itself has placed a strain on my wife and children, but I am determined to maintain my privacy. Because I believe I can pinpoint the cause of my AF problems, and because I could argue that it was if ‘not self inﬂicted’ at least avoidable, I am very resentful of having the condition. This has manifested itself (very rarely) in me losing my temper, usually with my closest family. Particularly at times of stress such as leading up to the ablation procedure. For me, and I suspect many others, the heart occupies a special place in our consciousness and this is reﬂected in our everyday language. If we wish to emphasise the importance of something we very often say ‘it is at the heart of the issue’ etc. And so for me when I was diagnosed with a heart condition I immediately thought that it was very serious and the consequences dire. So far this has not proved to be the case. I guess the point I am trying to make is that AF affects more than your physical state, it occupies your mind, and the non physical aspects of the condition are very important (to the patient). I believe anxiety and stress about the condition itself is a factor in treating the condition. I believe I have asymptomatic Atrial Fibrillation which means I am largely unaware of the erratic and irregular heart rhythm most of the time. However, if left untreated I would from time to time suffer from shortness of breath, fatigueparticularly using stairs, and a general lack of energy. I had an ablation procedure in

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 18

November 2006 but unfortunately it did not work. I am now on a combination of drugs including beta blockers; unfortunately I have started to suffer side effects from these drugs and we are looking again at other drugs and other options.

“I have had to build a drug regime into my life” During the seven years of having AF I have gone from someone who was loathe to take a headache tablet to someone who has become familiar with a wide range of drugs including warfarin. I have at some points had to adjust dosages in line with the results of monthly blood tests and mix and match various combinations of drugs. So I have had to build a drug regime into my life which is not always easy when travelling. At the moment I feel AF is manageable but I also feel I am on a medical treadmill with tests, drugs, consultations etc and I think back to the days when life seemed less complicated. Unlike some medical conditions there does not seem to be a deﬁnitive cure for AF, for me anyway, and I am resigned to learning to live with some low level symptoms and a drug regime. My priority is to be able to continue to earn a living and support my family, keep my privacy and not to let AF deﬁne me to the wider world. The thing about AF is that it can be like living life in the slow lane, you have no spare energy or enthusiasm and consequently it can feel like a form of premature aging…….or maybe I am just getting old!

Tel: +44 (0) 1789 451 837

Trying to reduce strokes in our community Dr John Havard, a GP from Suffolk, tells AFA of his innovative work to detect, diagnose and treat AF

“In Primary Care we need to make blood testing easier”

Taking a pulse manually and ﬁnding it irregular is the simplest way to detect AF

Preventative medicine is a large part of the GP’s role and explaining the importance of this to patients is a daily event. In stroke, we know that blood pressure control is crucial, and diabetes, smoking and obesity are other important factors which can load the dice and affect the risk of stroke in an individual. Of course age and family history are ﬁxed risks that can mean the variable ones become even more important. At the end of last year the Department of Health produced a document on stroke that was very interesting. Much of the controversy has been about the introduction of ‘stroke centres’ which will provide speedy diagnosis and management around the clock to try to improve outcomes. Less newsworthy is the fact that about 50,000 of the 110,000 strokes that occurred in 2007 happened in patients who

had high blood pressure and a heart condition called Atrial Fibrillation (AF). This is the most common arrhythmia (1.4% of the population but 10% of the over 80’s) and it causes an irregular pulse that makes the formation of tiny clots in the heart more likely. In fact patients with AF are five times more likely than those with normal rhythms to have a stroke. AF usually causes absolutely no symptoms at all and so part of the challenge is to find these patients and then try to reduce their risk of stroke. Finding new patients with AF GPs and Nurses can do their own screening on everyone who attends the Surgery. But taking a pulse and finding if it is irregular is something that anyone can do. If there is any doubt then

the pulse can be checked by a Nurse or a Doctor and if necessary a conﬁrmatory ECG can be done. We know from work elsewhere that there are about 60% more patients with AF than we are aware of and we want to identify and help them. The best treatment in most cases is to use warfarin (the clot-stopper). Warfarin is very effective but it does have drawbacks. Firstly it makes bruising and bleeding more likely because it slows down natural clotting. In some patients there is a balance of risk that suggests avoiding warfarin is the right thing to do - but these cases are relatively rare. There is no doubt that these are ‘rock and hard place’ decisions because in 1000 patients we know that six will have bleeds (with occasional fatalities) and yet 30 will have strokes. As GPs, our dilemma is that our warfarin treatment

www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 19

Table 1

1. Note that risk factors are not mutually exclusive, and are additive to each other producing a composite risk.

Patients, with paroxysmal, persistent, permanent AF

1 Determine stroke/ thromboembolic risk

High risk:

Moderate risk:

Low risk:

• previous ischaemic stroke/TIA or thromboembolic event

• age ≥ 65 with no high risk factors

• age < 65 with no moderate or high risk factors.

• age ≥ 75 with hypertension, diabetes or vascular disease*

• age < 75 with hypertension, diabetes or vascular disease*

• clinical evidence of valve disease or heart failure, or impaired left ventricular function on echocardiography. **

Anticoagulation with warfarin

Consider anticoagulation or aspirin

Contraindications to warfarin?

Warfarin, target INR 2.5 (range 2.0 to 3.0)

Aspirin 75 to 300 mg/ day if no contraindications

Reassess risk stratiﬁcation whenever individual risk factors are reviewed

2. Owing to lack of sufficient clear-cut evidence, treatment may be decided on an individual basis, and the physician must balance the risk and beneﬁts of warfarin versus aspirin. As stroke risk factors are cumulative, warfarin may, for example, be used in the presence of two or more moderate stroke risk factors. Referral and echocardiography may help in cases of uncertainty.

Stroke risk stratiﬁcation algorithm taken from current NICE guidelines on AF management. This ﬂow-chart shows the steps in deciding whether a patient should be on aspirin or warfarin. Decision as to which medication need to be discussed with your doctor.

could rarely cause death and yet not treating is generally much more likely to cause death or disability - and yet this might be seen by the public as ‘natural’. A frequent compromise is the

“There are about 60% more patients with AF than we are aware of” prescription of Aspirin which may save 12 strokes but the contention is that we should warfarinise more patients.

Why not warfarinise more patients with AF? The decision here weighs up a lot of factors. The risk of falls and subsequent bleeds, difﬁculty in getting the warfarin dose blood tests and uncertainty about whether patients will take the warfarin reliably are reasons quoted frequently by GPs. Occasionally the risks of treatment are given more emphasis than the risks of not treating although sometimes it is clearly right not to treat.

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 20

Patients and their relatives need to be aware of this balance so that mature decisions can be made. In the area of Suffolk where I practice, we now have a computer programme that can predict the annual risk of stroke while the patient is sitting in the Consulting Room. We know patients are more concerned about stroke than heart attack so this is powerful personal information that influences the decision that the patient and GP can now take together. Furthermore the patient information is also checked by a local cardiologist who gives an emailed response within a day based on the information supplied. This is a new move which, all those involved hope, will support both GPs and patients in difficult decisions. In Primary Care we need to make the blood testing easier and have this done in the home by someone who specialises in just warfarin. He or she can then help patients be clear about dosages possibly even using a portable machine in the home. As GPs we are fortunate to have the trust of our patients. We want to be open about the risks and benefits of warfarin and we feel that sharing the annual risk of stroke, cardiologist support and offering convenient home testing, will shift the balance towards more warfarin and less strokes.

Tel: +44 (0) 1789 451 837

Dr J S Havard

Aussie Heart Patient Cycles Across United States the causes and to improve treatments. He started cycling during his rehabilitation and it’s become a passion.

Australian heart patient Steve Quinn, has been busy cycling across the United States to raise awareness Atrial Fibrillation and Atrial Flutter – medical conditions that affect over 200,000 Australians and 500 000 people in the UK.

“I’ve really grown to love cycling and it has helped me enormously on the road to recovery. I really want to make a difference and thought, what can I do that is signiﬁcant enough and raises awareness dramatically? So the idea of riding across United States grew from there.” said Steve.

Steve has battled with debilitating symptoms for some years. The condition has affected all aspects of his life, and, as a 39 year old with a young family, his condition really took a toll on his loved ones as well. The sense of relief Steve experienced when his condition was controlled was, nonetheless, accompanied by a lingering frustration that it took so long to diagnose a condition that affects so many people.

Steve will cover 3836 miles! According to Steve, ﬁnishing the ride and raising awareness will be one thing but just as important will be meeting his wife and children at rides’ end. “It will be a tough seven weeks with all sorts of extremes but the one thing that will keep me going will be the thought of hugging Della and the kids when I get off the saddle in New Hampshire.”

With his conditions now under control, Steve has decided to channel his energy into making more people aware of the conditions and raising money to learn more about

Follow Steve’s progress: contact@ride4rhythm.com

Bring a smile and support Atrial Fibrillation Association Make your friends and family smile with the gift of a bear – and help fund raise for AFA! Bears cost £4.00 each or two for £7.00

Title:

Name:

Address: Post code: Contact telephone number:

Email address:

Number of Bears required: To pay by cheque: Please make cheques payable to: Atrial Fibrillation Association, and mark on the reverse: AFA Bear Please return the completed form and cheque if used to: Atrial Fibrillation Association, PO Box 1219, Chew magna, BS40 8WB To pay by credit card, please complete the following: Type of card:

Full name on card:

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www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 21

More Frequently Asked Questions In this issue, Dr Andrew Grace PhD FRCP Consultant Cardiologist at Papworth Hospital, Cambridge, helps to answer some of the many questions members have submitted.

What’s happening when I experience Atrial Fibrillation (AF)? When you get an attack of AF the main symptoms arise because of an irregular beating of the ventricular chambers of the heart caused by the atrial chambers beating erratically. The impact of the irregular beating of the heart on you as an individual will be different than on other individuals. Some individuals are very aware of a disruption of the heartbeat with irregularity whereas others are relatively unaware. In each case if an electrocardiogram is recorded (ECG), one sees the same pattern of irregular beating of the ventricular chambers of the heart with an underlying uncoordinated electrical action of the upper chambers.

Is there a reason why I have AF? Atrial Fibrillation is very common and indeed the number of individuals that are affected is increasing. There is no question that there is a clear age-related incidence of AF which would, therefore, imply that there is a powerful element of ‘wear and tear’ involved. Undoubtedly there are other inﬂuences such as high blood pressure and there is also a familial aspect to it. If a close family member has had AF then the likelihood of other individual members having that condition is increased. Some patients have an underlying problem with the thyroid gland. Therefore it is important that the doctors, when a patient ﬁrst presents with AF, check the level of the thyroid hormones

in the blood through a simple blood test. A number of patients have an underlying problem with the structure of the heart, and so all individuals diagnosed with AF should have an echocardiogram to look at how the heart is in terms of its size and its function. Often a patient may attribute the onset of their AF to a particular trigger, however suggestions such as stress, types of food and certain activities can only be related to the individual patient. For many if not most AF patients we have yet to discover the absolute cause of AF.

What initial investigations must I expect if I am found to have Atrial Fibrillation? If you are found to have AF then a doctor will first take your ‘history’ asking you certain questions trying to elicit what symptoms have arisen, and when, as a result of the AF. They would also be trying to identify any cause. They would then conduct an examination keeping a particular eye on the blood pressure, to see if there is any evidence of fluid overload which might be a manifestation of what is called heart failure and would also listen to the heart to see if they can hear any murmurs that might indicate that there are problems with the heart valves. Of course they will have to obtain an electrocardiogram (ECG) which will provide the diagnosis. In terms of secondary tests, those are ones that may not be immediately available with first presentation; I would in most patients request an echocardiogram

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 22

to indicate how the heart looks. Then in selected patients, what is called Holter recording, that is an ECG recording made over a period of 24 hours from a portable device would be discussed. This test would not be indicated in all patients.

What are the options for treating AF and is there a definitive treatment? There are four basic options that can be considered to suppress symptoms. The first is drug treatment, the second is electrical cardioversion, the third involves treatments based on pacemakers and the fourth option is radiofrequency ablation also currently referred to as ‘pulmonary vein isolation’ (PVI), however it is yet to be established as a viable treatment option in many patients with AF. Radio-frequency ablation is particularly effective in patients with PAF where cure rates of 80% are achieved. In patients with persistent AF cure remains more elusive although there are developments such as the use of special catheters that are now coming into play that maybe applicable to treat these groups of patients. The question of ablation is something you should raise with your doctor. Should you decide to take that question further, then it is important that the specialist considering conducting the ablation in you has got considerable experience of the technique. The relative pros and cons of different strategies and treatment options are case-specific and need to be discussed carefully on an individual basis with your doctor.

Tel: +44 (0) 1789 451 837

What is an electrical cardioversion? Electrical cardioversions are applied to people with persistent (not paroxysmal) AF. The patient is ﬁrst given a general anaesthetic, then pads are placed on the chest and an electric shock is given across the heart whilst the patient is asleep. In many patients this will restore normal rhythm. In those in whom the AF has been relatively short-lived the normal rhythm may be restored for a considerable period of time. In those who have had AF for longer or who have structurally damaged hearts as indicated by echocardiography, then the rhythm might go back to AF. A detailed patient information booklet on electrical cardioversion is available from AFA.

I have been found to have Atrial Fibrillation and have few symptoms. Do I actually need any treatment? In individuals who do not have any obvious or intrusive symptoms due to AF, then the decision as to how to treat them usually revolves around the containment of issues that may emerge due to the risk of stroke. The main question may therefore be should aspirin or warfarin be started? This is something that would need to be discussed with your doctor.

Will I ever need a pacemaker? There are three areas where pacemakers have been used in AF. The ﬁrst use of pacemakers is in those individuals who have AF and are also found to have a slow pulse. The addition of the pacemaker to the treatment in a patient under these conditions can be extremely

valuable in that it may allow the use of other drugs that would then suppress other symptoms of AF. In some patients with PAF pacemakers can be beneficial. It is now generally felt by most experts however that the only patients in whom this would be effective long-term are in those who have evidence of slow heartbeats or in facilitating the overall management of patients with AF particularly if they are elderly where ablation treatments might be considered unduly risky. The final use of pacemakers is in patients with persistent AF in whom the ventricular chambers are being bombarded extremely rapidly by the fibrillation. In those patients in whom drugs have previously been tried to stop these rapid ventricular responses then a pacemaker may be implanted. Once this is in place or even at the same time then the junction between the upper chambers and lower chambers can be easily disconnected by passing a catheter into the heart and applying energy to disrupt that connection – this is termed ‘ablation of the atrio-ventricular (AV) junction’. This overall procedure is colloquially referred to as a ‘pace and ablate’ procedure. It has been in use for almost 30 years and has proven to be highly effective in many patients. However, warfarin is likely to have to continue due to the atrial chambers, which are the usual source of clot, still beating erratically.

Is AF increasing my risk of other diseases? The main problem with Atrial Fibrillation is the risk of clot formation and the precipitation of stroke. It is obviously the most feared consequence and therefore after appropriate discussion and

once appropriate tests have been completed, then a proper judgment needs to be taken as to whether aspirin or warfarin should be started. The other problem with AF is that in the occasional patient it appears to cause heart failure and that again should be carefully considered in individuals. The echocardiogram is extremely powerful in guiding consideration and treatment of that possibility.

What are the drawbacks of taking warfarin? Warfarin inhibits the production of vitamin K in the liver, in doing so it slows the body’s ability to stop bleeding. Obviously this needs to be carefully monitored in order to keep a balance between risk of a stroke and risk of a serious bleed. So the ﬁrst consideration when taking warfarin is whether your risk factors and current medical conditions out weigh the risk of a serious bleed. The NICE guidelines, shown on page 20, help a doctor to consider all factors. Next, you will need to have regular blood tests – initially weekly, later perhaps every two – four weeks, to monitor your INR (international ratio) level. These are very important as levels can easily change but need to remain between INR of 2-3 for patients diagnosed with AF. Patients are also advised to moderate their intake of certain food items known to affect the production of vitamin K – this does not mean you must stop eating these foods, but that you should eat them in moderation and try to remain consistent in your frequency of eating them. A detailed list of foods with high to medium levels of vitamin K in is available from AFA.

www.atrialﬁbrillation.org.uk info@atrial-ﬁbrillation.org.uk 23