Published: 17/03/2005, Volume II5, No. 5947 Page 18 19
Self-management of long-term conditions is making itself felt in key par ts of the policy agenda, but there is little agreement on how effective it is. Professor Mike Bury argues that proof is sadly lacking, while David Pink claims that his scepticism is ill-deserved
FOR MIKE BURY
Mike Bury is emeritus professor of sociology at London University and author of a new book, Health and Illness. He was a keynote speaker at last month's launch conference for the Institute of Ideas' new health forum
www. instituteofideas. com/events/ healthforum. html
AGAINST DAVID PINK
David Pink is chief executive of the Long Term Medical Conditions Alliance.
www. lmca. org. uk
Mike Bury: In recent years chronic illness has risen up the healthcare agenda, beginning with the NHS plan in 2000 and running through to the 2004 improvement plan. The centrepiece has been the expert patient programme, launched by the government in 2001. The EPP is based on a lay-led self-care programme developed by Kate Lorig at Stanford University. Drawing on psychological theories about 'selfefficacy', it offers a six-week course run by chronic-illness sufferers.
As we approach the next election, an emphasis on self-care is increasingly being incorporated into preventative and public health policies alongside choice.
Notions of choice and self-care, like personal responsibility, appear self-evidently plausible. Low 'selfefficacy' is problematic for individuals living with chronic illness. Sessions on, for example, pain and fatigue or proper diet may help some in the everyday management of chronic conditions. But before the EPP moves out of its pilot phase, consideration needs to be given to the assumptions on which it is based.
First, there is the size of the problem. A number of documents and websites relating to self-care and the EPP state that '60 per cent of the adult population' live with long-term chronic conditions, 70-80 per cent of whom could self-manage.
To suggest that over one in two of the population has a chronic condition is questionable. In fact, overall levels of population health have improved substantially on all objective measures.
Self-reported illness is recognised as a doubtful measure. To say that the majority of the adult population suffer from chronic illness detracts from positive health gains and conveys the idea that most of us are constantly ill. Is this a message the Department of Health and health professionals can really endorse?
Second, the DoH has claimed that 'research evidence shows that supporting self-care can improve health outcomes'. In fact, the evidence is equivocal.
Individual testimonials in support of the EPP do not constitute rigorous research. Potentially negative views of those who decline to participate, feel patronised or drop out go unrecorded. The limited randomised controlled trial evidence available is mixed. There are no long-term controlled follow-up studies, and the most frequently cited short-term studies show improvements on some measures but not others.
The idea that self-management can alter the long-term health outcomes of chronic illness is misleading.
Before we go further along the road of self-care as a cure-all, debate about the nature of chronic illness and its management is needed.
David Pink: Mike makes some good points, but I am not convinced they support his scepticism.
First, the numbers game. The burden of 'chronic' disease is rising, especially in advanced economies like the UK, and this is true even though we can also say that health is improving. About a third of the population (17 million people) lives with a long-term condition, and we can be confident the numbers will only rise for the foreseeable future.
In fact the two are connected - as a result of our success in tackling premature death from acute illness we are all now able to look forward to a longer life. But that longer life will often be a life with a long-term condition. We might have much better survival rates from stroke, some cancers and HIV/AIDS, but we do not deliver permanent cures.
So the population can be healthier even though the proportion living with a permanent condition is increasing. A proportion of these 17 million people will be able to benefit from self-management courses. The fact that these courses do not suit all 17 million people does not detract from their established benefits.
Second, people living with longterm conditions do so largely outside healthcare premises. So traditional measures of clinical outcome are unlikely to serve us well. So if we can reduce pain or fatigue and improve someone's quality of life, the benefit might be well worth the effort.
Third, we need to be sensible about what evidence of benefit we seek. The self-management programmes have been used for many years in many different countries. Their use in the UK is the subject of a fairly comprehensive regulation system. The evidence that self-management can improve 'selfefficacy' is stronger than the evidence for most other interventions that seek to improve people's lives. The trial-based evidence shows improvement in some health status measures, but not others. This is a good result, and we should continue the research so that we can understand more about how to maximise the benefits.
Only fools would present selfmanagement for long-term conditions as a cure. But just because a few individuals have oversold the potential benefits of selfmanagement does not mean we should pull back.
Mike Bury: I welcome David's robust reply, but what he says makes me even more worried about widespread adoption of self-care and the EPP.
David's argument that 'a third' of the population live with a long-term condition is at variance with DoH statements that 60 per cent of adults do so (and that 70-80 per cent of these could self-manage). Which is it? The General Household Survey, showing that 60 per cent report 'long-standing illness', refers to those aged 65 and over, not the adult population as a whole. It is important, in any event, to go carefully with such figures.
Similarly David's statements that 'the burden of chronic disease is rising' and 'the proportion living with a permanent condition is increasing', though reflecting a common perception, cannot be accepted without question. The argument is about the possibility of the 'compression of morbidity' in old age as successive cohorts bring a healthier profile into later life.
Studies in the US and the UK have argued that this may be resulting in a reduction of chronic ill health and disability in later life.
David argues that selfmanagement programmes such as the EPP have 'established benefits'. But what are they? It is to be expected that many people who volunteer for a selfmanagement course will report that it has been beneficial. But to state - as for example the recent DoH document, Self Care: a real choice, does - that 'research shows that supporting self care can improve health outcomes' is another matter.
Current research on health outcomes (even using broad measures) does not back such claims.
Importantly, controlled observations have only been short-term, even though chronic illness unfolds over many years. Lorig's longer term uncontrolled follow-up study showed no pattern of 'good results'.
Enthusiasts can be carried away by their enthusiasm. It is time for a cool look at assumptions and evidence and to look more closely at sociological studies of how people already manage chronic illness. We should work with the grain of the strategies they employ, rather than advocate for the majority a model of individualised self-care - as the DoH seems determined to do.
David Pink: I will not attempt to prove that the DoH is evidencebased and consistent in all its behaviour. Who would? I have only said that a proportion of a mere third of the population could benefit from self-management support.
Although Mike does not put forward alternative figures, I think we can safely say that there are millions of people with asthma, diabetes, arthritis and other conditions who have the capacity to experience a better quality of life with self-management.
The more important question is whether we have a basis for deciding that support for self-management is worth introducing as a national programme. We have evidence for the Lorig model of self-management that is reasonably good.
As Mike says, we need to work with the grain of the strategies people use to manage their lives and cope with their health conditions - but that is exactly what the Lorig model does. Self-management training aims to help people with their lives; it is not clinical training for patients.
It is not within the NHS's power to stop self-care, though it can help people make it more effective. So it would be irresponsible to halt the development of support services.
People are living longer, but they are increasingly living with long-term conditions. Even a relatively rich country like the UK cannot cope with these people considering themselves 'sick' and relying on treatment or cure from the NHS. We have wellestablished approaches to selfmanagement that have an evidencebase that justifies deployment.
Let's not hold off because we have not established precisely how many people might need this support.
We should continue to research self-care, and we should be wary of over-the-top enthusiasts and politicians. But we cannot afford to wait and make do with a model of healthcare based on acute episodes in a clinical setting. Self-care deserves mainstream NHS support now, and should be expanded.