Introduction

Patient initiated follow-up (PIFU) is key to personalising outpatient care and, by giving patients more control over when they receive care, can reduce unnecessary routine follow-up appointments and free up clinician time for more complex patients.

This guide outlines a PIFU model of care for patients with arrhythmia to support systems and trusts in setting up formalised PIFU in their services. It supplements the generic Implementing patient initiated follow-up guidance for local systems and providers. It has been developed with patients, cardiologists, GPs and representatives of professional and patient associations, and colleagues across NHS England.

Why use PIFU in arrhythmia?

Arrhythmia covers a broad range of conditions that could be managed on a PIFU pathway. This gives the patient access to specialist care when they need it, rather than attending regular outpatient appointments regardless of whether they have symptoms.

Pathways suitable for patients with arrhythmia are:

• Timed PIFU pathways, where a patient is offered PIFU for a predetermined time before being discharged back to their GP.
• Continuous PIFU pathways, where a patient with a long-term condition requires ongoing access to a specialist team to manage their condition.

Placing a patient on either type of PIFU pathway is always at the discretion of the clinician in agreement with the patient. Patients will need a comprehensive understanding of the PIFU process, how and when to call for help, and appropriate education and support in self-managing their condition.

General inclusion and exclusion criteria for PIFU

PIFU should never be used as an alternative to clinical discharge. Suitable patients should be discharged using routine service guidelines.

Inclusion criteria

• Aged 18 and over.
• The patient or carer understands the principles of a PIFU pathway and feels confident using it, and/or has a carer who is willing to accept responsibility for monitoring their arrhythmia condition on their behalf.
• Regardless of the type of arrhythmia, patient is stable, and their medicines have been optimised.

Exclusion criteria

• Arrhythmia criteria: Patients with outstanding investigations or decisions still to be made regarding further options for care.
• Patient details:
• Cannot easily contact the service (e.g. lack of access to telephone/internet).
• Have low level of knowledge, skills and confidence to manage their follow-up care and/or no carer support.

Which patients with arrhythmia could benefit from PIFU?

Patients with:

cardiac rhythm management devices (CRM) in situ

• If not under the care of an arrhythmia service and therefore not on a PIFU pathway but develop symptoms, refer using the normal referral pathways.
• If on a PIFU pathway (by virtue of already being under the care of an arrhythmia service), remote monitoring can be used in a PIFU review to identify the cause of symptoms.

Supraventricular tachycardia

Patient with supraventricular tachycardia can be managed medically or with catheter ablation.

• Those managed successfully with ablation should be seen once post ablation and have an electrocardiogram, and then be discharged or placed on a timed PIFU pathway at the clinician’s discretion.
• Those managed successfully with medication should be considered for long-term PIFU.

Pre-excitation managed without electrophysiological study

• Consider long-term PIFU with the option of periodic outpatient review.

Atrial fibrillation (AF)

• Persistent AF managed with rate control and good left ventricular (LV) function: PIFU is not appropriate as these patients can be discharged post rate control.
• Persistent AF managed medically with rhythm control: PIFU is not suitable as these patients should be offered long-term follow-up or shared care with their GP.
• Persistent symptomatic AF with good LV function and managed successfully with ablation: these patients can be offered one follow-up appointment and time-limited PIFU for 2 years.
• Persistent AF associated with poor LV function and managed successfully with ablation: PIFU is not suitable as recurrence of AF and LV impairment often occurs well before symptoms. These patients should be offered long-term follow-up with electrophysiology or from a heart failure service. With this patient group, recurrence of AF and LV impairment often occurs well before symptoms.

Paroxysmal AF

• Asymptomatic with good LV function and good rate control: PIFU is not appropriate as these patients can be discharged.
• Symptomatic and managed successfully with a class 1 or class 3 anti-arrhythmic drug: PIFU is not suitable as these patients should be offered long-term follow-up or shared care with their GP. Patients managed with a class 2 or 4 anti-arrhythmic drug may be suitable for a continuous PIFU pathway or discharged.
• Symptomatic and managed successfully with ablation: these patients can be offered a 3–6-month review and then time-limited PIFU for 2 years.
• Paroxysmal or persistent AF treated with atrioventricular (AV) node ablation and a pacemaker: these patients should have an echocardiogram at 3–6 months and can then be discharged to follow-up at a pacing clinic and if appropriate a heart failure clinic.

Typical atrial flutter

• Symptom free and in sinus rhythm or stable well-controlled flutter with stable LV function: these patients can be discharged at 3–6 months.
• Persistent significant LV dysfunction: these patients may need ongoing care under a heart failure clinic.
• Co-existing AF: patients should be managed under the AF pathway.

Atypical atrial flutter/atrial tachycardia

• Successfully treated: patients can be discharged or referred back to the referring team after 6 months.
• With recurrent atrial arrhythmias: consider suitability for a long-term PIFU pathway.

Ventricular tachycardia

• In the context of a structurally normal heart: medically managed, consider timed PIFU for 3 years at the physician’s discretion; managed successfully with ablation, see once post ablation and perform an electrocardiogram, and then discharge or place on a time-limited PIFU pathway for 2 years.
• In the context of ischaemic cardiomyopathy regardless of device status: once optimised (medical or with ablation) these patients are not suitable for PIFU and should be moved to shared care with the heart failure team and pacing team or device team and their GP.
• In the context of non-ischaemic cardiomyopathy: patients should have long-term follow-up or shared care with the inherited cardiomyopathy team.
• In the context of an inherited channelopathy: patients should have long-term follow-up from the inherited channelopathy clinic.

Ventricular ectopy

• Asymptomatic high burden with normal ventricular function: patients should be offered a repeat echocardiogram at 1 year, and then discharged if there are no clinical concerns.
• Asymptomatic or symptomatic causing impaired LV function, successfully treated with ablation: offer 2-year follow-up and then discharge if LV function has fully recovered.
• Symptomatic treated with ablation, beta blocker or calcium channel blocker: consider time-limited PIFU at the physician’s discretion.

Other arrythmias (e.g. inappropriate sinus tachycardia, low burden supraventricular ectopy)

• Discharge where appropriate but may be suitable for PIFU at clinician’s discretion.

Placing a patient on an arrhythmia PIFU pathway

We recommend that organisations adopt a consistent approach for PIFU, but it is important that they tailor this to the needs of each arrhythmia service and to suit the services’ case mix. The cardiology team should have overall responsibility for the development of clinical guidance, risk stratification, protocols or standard operating procedure (SOP) relating to the implementation and delivery of a continuous PIFU pathway within their service.

Considerations are:

• The decision to put a patient on a PIFU pathway lies with the arrhythmia clinician in charge of the patient’s care.
• The patient should have the option to decline PIFU if it does not suit their needs and be reassured that their decision will not affect their ongoing care.
• It is essential that all patients on a PIFU pathway are placed on a register so that they can be tracked to avoid any immediate or long-term harm in their management.
• The decision to remove a patient from a PIFU pathway should not necessarily be the arrhythmia service or GP’s alone; it may need to be made in consultation with other hospital teams such as the dementia team, care home, social prescribers and pharmacists.

These teams should:

• feed back to the arrhythmia service and the relevant clinical records and patient administration tracking systems should be updated
• be able to contact the arrhythmia service on the patient’s behalf should the patient not be able to do so.
• Carers should be able to contact the arrhythmia service on the patient’s behalf to raise and discuss any concerning symptoms.
• If a patient is placed on a ReSPECT or end-of-life pathway, the arrhythmia team should be informed as the patient may need to be removed from the PIFU pathway and managed in a more appropriate way for their care needs.

Shared decision-making

Where PIFU is considered a suitable option, a shared decision-making conversation should take place between the clinician and patient and/or carer. Shared decision-making is a collaborative process that involves the patient or carer and their healthcare professional working together to reach a joint decision about care. To do so the patient and/or carer needs to understand the risks, benefits and any consequences of being on a PIFU pathway.  

Discussions should cover:

• What PIFU is and why the patient is suitable for it. The patient and/or carer should be encouraged to ask questions, to check they understand how the service works.
• How and when to contact the arrhythmia service, with the patient and/or carer given phone numbers and leaflets in a format they can easily understand and signposted to appropriate websites.
• The time within which a patient/carer calling for help can expect a response from the arrhythmia service (see below).
• How a PIFU pathway works between primary and secondary care and any other services involved in the patient’s care.
• How PIFU connects with any remote monitoring or additional timed follow-up appointments (e.g. for medication monitoring, symptom management, blood tests).
• Clarification that the patient can change their mind about PIFU.
• Clarification that if the patient is unwell and cannot immediately contact their local PIFU team, they should still access primary care and/or emergency services as necessary.

When PIFU has been confirmed the clinician should record this on the trust clinical outcome form (COF). The COF, either paper or electronic, will need to specify that the patient is now on a PIFU pathway for arrhythmia management. The patent will then need to be tracked via the patient electronic record to ensure there is no chance they are lost to follow-up in the hospital tracking system. The GP will be informed that their patient has moved to a PIFU pathway by the normal route for that service.

A change in a patient’s situation while on PIFU

While on a PIFU pathway a patient may become unsafe to remain on it, they may become unwell with another clinical condition (e.g. develop dementia or a life-limiting condition), or the patient’s carer may become unwell, or the patient may be moved to a care home. Should such a situation arise, the GP or member of the primary/community or secondary care team will need to inform the arrhythmia service of the change in the patient’s circumstances. The arrhythmia service will then decide if a PIFU pathway remains the optimal way to care for the patient or if an alternative plan needs to be made.     

Target response times

A patient contacting the PIFU helpline for the arrhythmia service should expect a response within 2 working days. The arrhythmia team will decide if and how soon the patient requires any tests and/or a consultation. We strongly recommend there is a robust process in place to clinically assess and monitor the turnaround time of calls and clinical reviews. Response time delays or lack of clinic capacity for patients needing to be seen should be raised urgently with the service lead. Any response time delays should be communicated to the patient and/or carer and if there are safety concerns about the patient’s condition an alternative plan should be created and communicated to the patient and/or carer.

Any safety incidents relating to patient management on a PIFU pathway should be documented and an appropriate incident form completed. There should be a robust process in place for regularly reviewing any clinical incidents related to arrhythmia patients on PIFU.

Technology

Where appropriate, technological devices should be used to manage patients as efficiently as possible; for example, remote monitoring for patients with implantable cardiac rhythm devices, and phone apps or supplementary tools (e.g. Kardia) that the patient can use to record electrocardiograms and send these direct to the clinical team.

Personalised care

Personalised care approaches operated through the PIFU pathway can empower and enable patients to better manage their own condition. Continuous PIFU pathways, personalised care and remote monitoring are interlinked elements of integrated care that enable a patient to receive clinical support close to home while remaining under the care of the arrhythmia service. Where possible patients should be given an arrhythmia care plan to support the PIFU pathway.

Health inequalities

Engagement with patients and patient groups

Through listening and talking to patients and/or carers about PIFU we know that the things that matter most to them about receiving PIFU managed care are:

• Discussions around PIFU should start at the point of diagnosis as PIFU is part of their whole treatment pathway. Discussing PIFU early in the pathway means that patients have plenty of time to think, ask questions and raise concerns as they move through their treatment.
• Patients can suffer from information overload if too much complex information is provided in one consultation. Having more than one conversation about PIFU means that the patient has time to absorb information and reflect on what it means to them.
• Careful consideration should be given to the significant emotional impact of an arrhythmia diagnosis and the effect it has on a patient’s daily life. Patients have asked that specific attention is given to their emotional wellbeing and the extra support they may need to cope with their diagnosis.

We recommend the involvement of patient and patient groups in the development of any local PIFU guidance, SOPs or patient information leaflets, to ensure the patient and carer voice is represented in these materials.

Acknowledgements

We are grateful to the following for their involvement in the development of this guidance:

Alan Keys, Patient Representative, Healthwatch East Sussex, British Cardiovascular Society

British Heart Rhythm Society

Dr Joseph De Bono, Consultant Cardiologist, University Hospitals Birmingham NHS Foundation Trust

Dr Mathew Fay, Clinical Director of Cardiology, Westcliffe Health Innovations

Professor Nicholas Linker, National Clinical Director for Heart Disease, Consultant Cardiologist, The James Cook University Hospital, South Tees Hospitals NHS Foundation Trust

Trudie Loban, Founder and Trustee of Arrhythmia Alliance 

Dr Vivienne Ezzat, Consultant Electrophysiologist, St Bartholomew’s Hospital, Barts Health NHS Trust