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A successful online self-management programme is helping patients with cardiac problems to stay healthy. Now, as Janet Wright discovers, patients with COPD are set to benefit too

Rehabilitation works. Plenty of studies confirm physiotherapists’ own observations that patients make better and longer-lasting progress if they follow a rehabilitation programme.

‘Cardiac rehabilitation is a cost-effective programme that reduces mortality, as well as promoting self-management and improving quality of life,’ says Mike Knapton of the British Heart Foundation.

‘There is increasing evidence that it also reduces unplanned hospital admissions.’

Similar research findings make the case for pulmonary rehabilitation. And by reducing hospital readmissions and ongoing care – primary care for respiratory disease alone costs the NHS £500 million a year – rehabilitation makes financial sense too.

Yet the UK’s rehabilitation services are patchy (see Box, far right). And among those who do get a referral, many patients either fail to take it up or drop out before the end.

Around one patient in five who is offered cardiac rehabilitation turns it down, according to the 2012 National Audit of Cardiac Rehabilitation.

Physiotherapist’s ‘brainchild’

Now a unique online cardiac self-management programme, developed at University Hospitals of Leicester (UHL) NHS Trust, aims to tackle the problem.

Activate Your Heart (AYH) is the brainchild of CSP member Sally Singh, the trust’s head of cardiac and pulmonary rehabilitation.

And it is proving so successful among patients that the department has set up a similar scheme for respiratory conditions (see ‘Breathing space’ panel on page 26).

A big challenge to develop? Professor Singh laughs.

‘It was a nightmare to develop and it’s taken forever to get there,’ she says, running through a few of the hurdles her team has encountered.

‘Interactivity is incredibly challenging. And embedding feedback. Being mindful of all the technology we’d look to use in terms of behaviour change is hard. Getting the content sorted is difficult.

Legalities as well, data management, security. And finding the money to do it!’

Rehab specialists, IT experts and patients have been working on the project for 10 years.

‘Technology has changed,’ says Professor Singh, ‘and the people we’ve worked with have been increasingly sophisticated in their approach.’

The efforts paid off, though. The result is a flexible, responsive programme – with all content approved by the Plain English Campaign – that’s easy for both patients and professionals to use.

‘As a clinician, I find enrolling patients on to the AYH programme has a number of advantages,’ says Amye Watt, a senior physio in cardiac rehabilitation at Glenfield Hospital.

‘It lets me oversee large numbers of patients in a more manageable way. The administration side also gives me the ability to review my patients’ progression through the site.

‘Clinicians can post information in response to current trends from news headlines and articles, and can link in to local events in the blog section.’

Sixty five per cent of patients who followed the AYH programme told the department they would not have done conventional rehab classes.

Some were put off by having to exercise with other people. Other reasons included returning to work, transport issues and inconvenient class times.

The online format overcomes some of the main obstacles to rehab. As Prof Singh says: ‘When you come to conventional cardiac rehab, the physio’s only there at 2pm on Wednesday!’ – whereas AYH users can email a panel of experts when an issue arises, receiving an individual answer addressing their personal concerns.

Goals are generated to match each patient’s risk factors, such as smoking, and patients can add their own individual goals.

‘For patients, the site is extremely easy to navigate, with a video introduction to help them get started,’ says Ms Watt. ‘It is specifically staged to guide patients through the programme, while encouraging and maintaining interaction.’  

However, while some patients dislike the group environment of conventional rehabilitation courses, others find it helpful and supportive. 

Rates of anxiety and depression have fallen

To fill that gap, AYH patients can discuss their concerns with each other through the forum, with the choice of remaining anonymous if they wish. To safeguard patient confidentiality, all data is encrypted.

The site is packed with features that encourage patients to keep going – including pop-up prompts – and make it easy to record and see their progress.

At every stage they are given appropriate advice and information, in video and audio format as well as onscreen.

Automatic emails are sent to the patient if they are not logging on or not progressing through the site.

The results have become clear during the couple of years that patients having been using online self-management. Users have better health, more exercise capacity and less anxiety and depression, says Ms Watt.

‘We have also seen a positive influence on behavioural changes, with a significant number of patients exercising for at least 30 minutes five days a week,’ she adds. ‘And there have been no adverse effects.’  

The benefits to the health service seem equally clear. By offering the online programme to patients at low or moderate risk, UHL has been able to redirect funding to services for high-risk patients, increase capacity and reduce waiting times. fl

The Activate Your Heart programme will soon be available in other parts of the UK, for a small charge.

See: www.activateyourheart.org.uk

‘Inequity in provision and uptake’

The Department of Health wants 85 per cent of patients who could benefit from cardiac rehab to receive it.

Guidelines set by the National Institute for Health and Clinical Excellence state that pulmonary rehab should be offered to everyone who considers themselves disabled by COPD.

Programmes should be held at times that suit patients, in easily accessible buildings, say the guidelines.

In reality, rehabilitation services are limited by a postcode lottery in which some areas provide little or nothing to most patients.

Only 44 per cent of patients in the UK who’ve had a heart attack, angioplasty or coronary bypass receive cardiac rehab, according to the 2012 National Audit of Cardiac Rehabilitation.

‘Inequity in provision and uptake continues to exist within regions and across gender, with only 30 per cent of women, on average, accessing cardiac rehabilitation,’ says Jenni Jones, of the British Association for Cardiovascular Prevention and Rehabilitation.

Also, some services have shrunk. National audits show that only 64 per cent of cardiac rehab programmes offered physiotherapy last year, down from 75 per cent three years earlier.

The 2008 National COPD Audit of NHS hospitals found that, while 52 per cent had a formal pulmonary rehab programme for all their eligible patients, 38 per cent only provided this for some patients and 10 per cent had no provision.

Visit: www.csp.org.uk and search for ‘Physio works’ for publications on COPD and cardiac rehabilitation.

  • The Department of Health wants 85 per cent of patients who could benefit from cardiac rehab to receive it.
  • Only 44 per cent of patients in the UK who’ve had a heart attack, angioplasty or coronary bypass receive cardiac rehab, according to the 2012 National Audit of Cardiac Rehabilitation.
  • National audits show that only 64 per cent of cardiac rehab programmes offered physiotherapy last year, down from 75 per cent three years earlier.
  • The 2008 National COPD Audit of NHS hospitals found that, while 52 per cent had a formal pulmonary rehab programme for all their eligible patients, 38 per cent only provided this for some patients 10 per cent had no provision.

Breathing space

The Department of Health (DH) says patients with moderate or advanced chronic obstructive pulmonary disease (COPD) need pulmonary rehabilitation – a supervised exercise programme including education and psychological support to help change behaviour such as smoking.

‘There is very strong evidence that it improves exercise tolerance and health-related quality of life, as well as reducing breathlessness and an individual’s use of the healthcare system,’ according to the DH’s 2010 consultation document on a strategy for COPD.

But as with cardiac rehab, researchers have found that many people are put off by problems such as inconvenient timing, transport difficulties and distance to travel.

In addition, the spiral of breathlessness and fear engendered by COPD makes exercise harder than for cardiac patients.

The condition is exacerbated by living in cold, damp surroundings and many patients live on low incomes and find it hard to access services.

So, following its success with cardiac self-management UHL is developing an online rehab programme called SPACE FOR COPD.

‘In principle, parts are similar to the cardiac programme,’ says Professor Singh.

‘But patients with COPD have different levels of activity. It’s a little more challenging to deliver the programme online than for cardiac patients.’

Unlike the cardiac programme, which is aimed at patients,  Self-management Programme of Activity Coping and Education (SPACE) includes training for physios and other healthcare professionals.

‘Ask the expert’ facility

‘The respiratory project started as a manual-based self-management programme,’ says Professor Singh.

‘But we realised that the healthcare professions needed to deliver a supported self-management strategy for patients.

So we set up a website for professionals, giving them online training to be followed by a contact day.’

The online training includes a series of interactive teaching presentations. SPACE – highly commended in this year’s British Thoracic Society awards – also provides a moderated discussion forum for healthcare professions, email access to experts at Glenfield Hospital and a COPD news blog.

Its pioneering approach lets professionals work in partnership with patients by introducing them to the online manual and providing support as they work their way through.

For patients, the programme starts with quizzes to establish how much they know about their condition.

They are then given a ‘My progress’ page where they can record their goals (for example, stopping smoking) and achievements.

They are guided through a prescribed exercise programme, tailored to their needs and abilities.

Educational topics include information about breathing control, exercise, nutrition and medicines.

Throughout the programme, patients have the backing of an ‘Ask the Expert’ email facility, a discussion forum and a blog.

With the healthcare professionals’ side of the site already tried and tested, the team have now been awarded a grant to test the patients’ side.

‘The choice was a no-brainer’

Feedback from enthusiastic patients played an important role in developing Activate Your Heart (AYH).

Phil Caldwell (pictured below), who runs a travel firm, thought he was leading a healthy life until a heart attack put him in Glenfield Hospital two years ago.

Leaving with a stent in his left coronary artery, he was offered the choice of conventional rehab or the brand-new AYH programme.

His busy lifestyle made the choice ‘a no-brainer’, he says. Since then he’s learned that men in his demographic and age group who have relatively mild cardiac events tend not to take up rehab.

‘The site gave me flexibility to tailor my own rehab time and content-wise.

The goal-setting functions and the exercise diary were extremely useful there,’ he says.

‘I guess the proof of the pudding is that I have kept up many of the things I took on board during the six weeks I spent on the course.’

Mr Caldwell, 53, volunteered as a patient representative at Glenfield Hospital, and joined the group of rehab and IT specialists on the website development team.

They met once a fortnight for nine months to develop the AYH site ‘into something even more complete’ – more knowledge and information, better layout, features and functionality, and a site that motivated people to join it and to stay in the programme.

‘Here was a real opportunity to bring cardiac rehab to a wider spectrum of patients,’ he says. ‘I am convinced the AYH site will achieve this.’

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