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The expert patient

Patients are steering the decision-making process in the treatment of chronic disease
During the past 60 years many more people have lived into their 70s, 80s and beyond, than every before. This greater longevity has brought with it an increased burden of heart disease, stroke, cancer, arthritis, diabetes, mental illness, asthma and other conditions of increasing importance to the revenues of pharmaceutical companies.

As a result, the predominant disease pattern in most developed countries is one of chronic or long-term illness rather than acute disease. This is increasing the pressure on healthcare systems throughout the developed world, as these age cohorts are inevitably the ones that make the most use of healthcare.

Decision makers
Research and practical experience in North America and the UK has shown that today's patients with chronic diseases can become key decision-makers in the treatment process. This requires ensuring that knowledge of their condition is developed to a point where they can take some responsibility for its management and work in partnership with their healthcare providers.

Self-management programmes can be designed to reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy.

Research in Oxfordshire, UK, in 2006 into decision-making in the general practice consultation produced some interesting results. Observation of 212 doctor-patient consultations in general practice demonstrated that there was a range of decision-making opportunities in addition to those involving medical treatment. With the exception of 'fitness for work,' decisions were generally 'doctor led.'

There was only moderate agreement between patient perceptions of their level of involvement in decision making and objective ratings using a new instrument - the Evidence-based Patient Choice Instrument (EBPCI). There was also a wide variation in the ability of doctors to meet their patients' preferences with regard to their involvement in the decision-making role.

Patients' perceptions of shared decision making appeared to be influenced by the doctors' general consultation skills.

Expert patient programme
The UK is leading the way in northern Europe in formalising the role of the patient in determining healthcare, both in general delivery terms and for themselves. The Expert Patients Programme (EPP) was launched by the Department of Health in England in 2001 with the aim of establishing self-management programmes in the NHS. The intention being to ensure that patients use healthcare services appropriately.

So who are 'Expert Patients?' The Task Force set up to develop the programme defines them as patients who:

  • feel confident and in control of their life
  • aim to manage their condition, in partnership with professionals
  • become informed about their condition and its treatment
  • communicate effectively with professionals and are willing to share responsibility with them
  • make best use of professional advice, support and treatment
  • are realistic about the impact of their disease on themselves and on their family
  • use their skills and knowledge to lead a full life.

    Core skills training
    The mainstay of the EPP is a six-week self care skills training course which is based on the Chronic Disease Self-management Programme (CDSMP) developed in the US. The course is open to anyone with a long-term condition in any disease area and is delivered through Primary Care Trusts by people who have personal experience of living with a long-term condition. The CDSMP teaches five core skills: 

  • problem solving
  • decision making
  • resource utilisation
  • developing effective partnerships with health care providers
  • taking action.

    Conditions for which the EPP appears to be most used include back pain, diabetes, arthritis, irritable bowel syndrome, cancer, myalgic encephalopathy (ME), congenital heart disease (CHD), vascular disease, multiple sclerosis, mental illness, psoriasis, epilepsy and asthma.

    Evaluation
    Evaluation in 2007 of the implementation and effectiveness of the Expert Patients' Programme (EPP) during its pilot phase found that after 6 months there were:

  • moderate gains in self-efficacy
  • small gains in energy
  • improvements in quality of life equivalent to one additional week in perfect health over a period of 6 months
  • small gains in secondary outcomes such as psychological well being and partnerships with doctors
  • no impacts on routine health service use (such as GPs, practice nurse and outpatient visits)
  • some reductions in costs of hospital use (inpatient and day case)
  • increases in out of pocket costs (such as payments for alternative therapies, domestic help and special dietary needs)
  • no major increases in overall costs, because the costs of sending people on the course were recouped from savings elsewhere in the system.

    In the initial phase, the EPP courses tended to engage people who were already committed to self-managing and who tended to be white, middle class and well educated. Clearly, the EPPs are helpful for some people but have not, as yet, achieved the desired goals of a more self-sufficient patient population overall.

    The Author
    Dr Paul Stuart-Kregor is a director at the MSI Consultancy. For more information visit www.msi.co.uk

  • 9th May 2008

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