The Department of Health defines long-term conditions as ‘diseases which current medical interventions can only control not cure’. These types of conditions create a unique challenge to both developing and developed countries. In this article, Joanna Goodwin discusses the different models of long-term care management that have already been established in the US and discusses whether they can be applied to the UK.
First published January 2006; Updated May 2021
Globally, as infant mortality decreases and populations live longer, there is greater exposure to risk factors that can premeditate the development of long-term conditions, such as obesity and tobacco smoke2. In the UK, 17.5 million people have a long-term condition3; the most common conditions being arthritis, heart disease and respiratory diseases1. Older people are more likely to have multiple long term conditions than their younger counterparts, and the risks of this increases as they age1-3. Globally, 87 per cent of over 65 year olds have at least one long-term condition and 67 per cent have multiple conditions. These figures rise in the over 80 years age group – 92 per cent have one long-term condition and 73 per cent have more than one4.
Impact on healthcare resources
In the US, 83 per cent of the healthcare spending is for people with long-term conditions4. This is mirrored in the UK, where 80 per cent of General Practitioner (GP) consultations and 60 per cent of hospital bed days are associated with long-term conditions1. Healthcare spending sharply rises as the number of long-term conditions increases1,3 and the cost of long-term conditions does not only impact on health resources. For example in 1999, Coronary Heart Disease (CHD) was estimated to cost £7.06 billion in the UK, but only 25 per cent of this was spent on direct healthcare with the rest spent on informal care costs and lost earnings due to ill health5. This article will discuss the different models of long-term management that have been established in the US and look at whether these could be applied to a UK setting.
Chronic Care Model
The Chronic Care Model, introduced by Wagner in 2002, has gained authority and respect in the US6 . Traditionally healthcare has been organised around the needs of acute, episodic care. However, an acute care model when applied to long-term conditions results in unnecessary, lengthy hospital admissions, a passive patient experience and costly healthcare7. In the Chronic Care Model, care is placed squarely in the primary care arena, facilitating secondary care only as necessary. This framework is then broken down into six building blocks of care: the organisation of health care, community resources, self-management support, delivery system design, decision support and clinical information systems7.
Long-term conditions and the NHS
The Department of Health (DoH) uses the Chronic Care Model in its policies such as the National Service Frameworks (NSFs) for conditions such as CHD and diabetes, which have provided guidelines for management based on robust evidence. In addition, the General Medical Services GP contract has a funding stream dedicated to quality payments linked to long-term conditions. This ensures that the organisation of healthcare is focused on the provision of services to those with chronic illnesses8.
As well as using the Chronic Care Model, the DoH has adapted the Pyramid of Care from the Kaiser Permanente model (by the American healthcare insurance group1,3,9) and used it in the NHS Improvement Plan9 and other documents. The base of the Kaiser Permanente model, which is discussed later on in this article, rests on population wide prevention of ill health and health promotion. Interestingly the Pyramid of Care does not appear in the DoH’s most recent document, The NSF for Long-term Conditions10.
The Pyramid of Care
Level one of the pyramid consists of supported self-care; it is anticipated that 70 to 80 per cent of the long-term condition population will be managed this way. This involves education about their condition, the knowledge to manage changes in their health and the importance of taking medication as prescribed. Effective support includes improving the individual’s confidence and capacity to become an active partner in managing their long-term condition11. One method of facilitating this is via the Expert Patient Programme. This is led by a non-medical leader and people who have a long-term condition themselves. This is an acknowledgement that disease management can be viewed too much in a medical model framework and that living with a condition provides a unique insight to its management12.
Level two of the pyramid is disease-specific care management. People with complex needs relating to a particular condition are cared for in this way. Care is provided by multi-disciplinary teams, which have specialist knowledge of the appropriate condition, and care is based on evidence based guidelines and patient pathways using the NSFs and guidance produced by the National Institute for Health and Clinical Excellence (NICE)9. Individual studies have shown disease-specific care management can be effective, but the level of success varies between the severity of the condition, mode of intervention and type of patient included13. This point is also very relevant when discussing case management.
Disease-specific management is generally presumed to be more cost effective than conventional care. The DoH expects long-term condition management to reduce emergency bed days and the resultant cost by five per cent by 20083, but there is a scarcity of evidence on cost reductions from implementing care management, and available studies have methodological limitations. Also, studies often fail to capture the cost of implementing the intervention itself. Hidden costs include training of staff and cost of identifying and enrolling of patients. Thus, the Congressional Budget Office in the US finds that ‘to date there is insufficient evidence to conclude that disease management programmes can generally reduce the overall cost of health care services14.
Level three of the pyramid is case management. This is for the small percentage of patients who have multiple long-term conditions, whose complexity makes them high users of primary care, social care and unplanned hospital time. These patients are often older people and are particularly the oldest old. Case management is intensive, individualised and involves enduring care that evaluates medical and nursing needs as they rapidly change. It also takes a holistic view of health and social care to provide input centred on an individual1,3.
Castlefields – Unique Care Model
This approach to case management started in 1999 in a health centre in Runcorn. The model involves a joint assessment by a social worker and nurse to address health and social care needs driven by the patient themselves. The team also proactively inreaches into hospital to support discharge planning and has criteria to assertively access patients before crisis intervention is required15.
The Unique Care model sees itself as differing from the US models, by the increased skills of existing staff, rather than the implementation of a new team. The service has reported a 15 per cent fall in hospital admissions from a baseline in 1999 after four years and a reduction in bed occupancy of 41 per cent16. This evidence has not been published in a peer reviewed journal and is essentially based on evidence from one healthcare centre. Despite this, the National Primary Care Development Team, a DoH support vehicle for Primary Care Trusts (PCTs), is advocating the countrywide uptake of the model.
Kaiser Permanente approach
Kaiser Permanente Medical Care Programme is a large managed care organisation with eight million members in the US. Their approach to long-term condition management can be seen from the Kaiser Permanente Pyramid of Care described earlier. They are proactively involved in all layers of care in the pyramid.
The organisation collects health insurance payments from members and then provides them with care. Physicians have an interest in minimising hospital stays because they share responsibility for the success of the programme; they also provide the clinical leadership for the organisation, rather than generic managers. Medical specialists also work alongside primary care generalists, so there is no incentive to have overlong hospital stays. In addition, there is integrated care across primary and secondary care, as Kaiser Permanente provide both care systems17.
Both the individual purchasing their health plan and large organisations bulk buying healthcare for their employees have effective levers on American healthcare providers. They are able to negotiate for lower cost, high quality services and to move between providers as they wish. This ensures that the organisation is competitive and responds quickly to clinical needs to provide prompt diagnosis and treatment18.
Feachem et al18 compared the cost and performance of the NHS to Kaiser Permanente in California. They found for relatively similar population characteristics, activities and cost, there were nearly four times the number of acute bed days in the NHS than for Kaiser Permanente per 1,000 population. Access of services was much quicker with the Kaiser Permanente model: 80 per cent of NHS patients referred to a consultant were seen in 13 weeks, compared with Kaiser Permanente where 80 per cent of patients were seen in two weeks. Feachem et al’s methodology has resulted in much critique and discussion, but the differences are stark.
Ham et al19 further explored this area; they analysed 11 common conditions and found that admission rates, length of stay and bed day use were higher for the NHS than for Kaiser Permanente. For example, length of stay for stroke and hip fractures was five to six times longer for NHS patients than for Kaiser Permanente patients19. The application of the Kaiser Permanente system to the UK would not be possible in the US form. It is very much a whole systems approach with specific drivers to ensure quality and efficiency. There are many points to learn, however, especially for the management of long-term conditions; for example, the emphasis on primary care and integration of care.
The UnitedHealthcare group model, Evercare, is based on five core principles: individualised, holistic person centred care; the use of primary care as the controlling, commissioning force; care provided in the least invasive setting; reduction in unnecessary polypharmacy; and lastly, a data feedback system to improve performance17,20. These principles are echoed throughout more recent DoH publications3,9.
Evercare implement these strategies via the use of Advanced Primary Nurses (APNs). Their role is one of ‘generalist with special interests rather than specialists’17 or proactive generalists rather than reactive specialists20. Abilities include physical examination, illness monitoring, close collaborative working with the GP and critical reasoning to provide the best care for their patients20. The UnitedHealthcare group state that the Evercare US programme reduces hospital admissions by 50 per cent, decreases medication costs, is popular with enrollees and improves clinical practice21.
This is supported by a study by Kane et al22, but the paper raised some interesting points that certainly limit Evercare’s potential to be applied to an UK setting. Firstly, in the US, the Evercare model is almost exclusively used in nursing home settings, so its application to community dwelling vulnerable adults is unproven. The study also found that Evercare was successful due to the use of Intensive Service Days. These were an incentive payment to the nursing home to provide any extra nursing support to prevent a hospitalisation. When hospitalisation and Intensive Service Days were counted together, Evercare admission rate was similarpa to the control groups22. The study unfortunately did not incorporate a cost analysis of the different patterns of care.
The DoH is currently piloting the Evercare model in 10 PCTs in the UK. This project is still under evaluation, but Evercare’s own interim report summarises that the approach can successfully be applied to the UK. They state that they have identified a previously unidentified high-risk population, and have re-engineered the 23 nursing workforce and improved collaborative patient care21. They do not provide any statistics from the pilot sites, but give anecdotal examples of admission avoidance and reducing hospital stays21.
Research by the National Primary Care Research and Development Centre is currently evaluating the UK Evercare pilot sites and they identify some key flaws to the evidence produced20. For example, one of the central themes to the Evercare model is its identification of high-risk people who would benefit from case management. One of the main methods by which this is carried out is identifying older people who have had two or more unplanned hospital admissions in the last year. The report analysed the Hospital Episode Statistics and found that the number of admissions for these people fell in the next year. In the year in which they are identified, people who would meet the criteria for the Evercare programme were responsible for 38 per cent of hospital admissions. In the following year they were responsible for 10 per cent of admissions, and this drops to six per cent of admissions the year after21. It is not known why this is at present (possibly because admission to permanent care plays a large factor) but it highlights that although a previous unplanned admission is a risk factor for a future admission, it is one of poor predictive value. Evercare or any other case management model should not therefore use unplanned admissions as their main recruiting grounds for case management.
This limited effect on unplanned hospital admissions will be the same for other case management programmes who base their patient identification on previous hospital admissions. Thus, for a scheme to prove its efficacy it would need to include a control group as a comparison, rather than rely on a decrease in hospital admissions20. UnitedHealthcare Group start to acknowledge this within their more recent final report23. They explain some of the drop in hospital admissions as a ‘regression toward the mean’. That is the extreme population selected, i.e. those with two or more unplanned admissions, are likely by chance to be less extreme when measured in the future. This confusing explanation would only be clarified by the gold standard of a randomised controlled trial23.
It is unlikely that Evercare UK will be as successful as the US model due to the community dwelling population and lack of Intensive Service Days.
The evidence base for case management
As discussed, the above schemes have not produced independent research based on a randomised controlled trial format to support their case management programmes. There has, however, been a variety of studies undertaken on case management outside of these organisations. The NHS management centre’s rapid review ‘found inconsistent evidence of the effects of case management on quality of care, clinical outcomes and healthcare resource use from 11 systematic reviews, 19 additional randomised trials and four other studies24’. The King’s Fund report further broke this down to identify weak evidence for case management to prevent hospital admissions, no decrease in emergency department use, some decrease in length of hospital stay and modest improvement in functional abilities25.
Limited work has also been done to identify the successful components of case management programmes. Stuck et al found that the effects of the found that the effects of the intervention varied considerably dependent on the skills and abilities of the case manager providing the care. One nurse identified fewer problems than the other two nurses and subsequently did not have the same effect on reducing nursing home admissions and improving functional abilities of the patients seen26. Gagnon et al identified the lack of authority identified the lack of authority and credibility of the case managers as the reason for their insignificant findings27.
Counter-intuitive results have also been found with regards to medication review, which is a core component of case management schemes. Holland et al found that a medication review by a pharmacist found that a medication review by a pharmacist following discharge from hospital actually increased readmission rates to hospital by 30 per cent and increased GP home visits by 43 per cent28. Their initial analysis of these findings suggest that patients may have had more knowledge of their conditions and may have self-referred themselves to services when unwell or that due to better adherence to medications, they may have inadvertently triggered iatrogenic illnesses28.
The community matron
The DoH has placed the responsibility for case management onto a new healthcare professional – the community matron. This professional will coordinate complex needs across health and social care, to pro-actively manage problems before they lead to poorer health or hospitalisation9. The NHS Improvement Plan states there will be over 3,000 community matrons by 20089. This new role is very much modelled on the APN from the Evercare scheme29.
The community matron will take responsibility for around 50 to 80 patients, develop a personalised care plan and monitor the individual regularly9,29. They will have advanced roles, such as managing medications, including prescribing and ordering investigations29. It is anticipated that district nurses will be the most appropriate existing staff group to take on this role29. This however could lead to staff shortages in this branch of nursing, which currently struggles with recruitment and retention problems30. This has been found to be a problem in the Evercare pilot sites, where there were delays in backfilling posts and some nurses trying to attempt both roles21. It is also thought that the DoH has been too specific in identifying only nurses for this role. Occupational therapists or community physiotherapists would also be well placed to take on this role.
We can trace the DoH’s response to the looming crisis of long-term conditions management through US processes such as the Chronic Care Model, Kaiser Permanente’s pyramid of care and Evercare’s use of APNs. It is, however, simplistic to think that these tools, in particular case management, will revolutionise the care of people struggling with long term conditions without whole system change and significant drivers to improve care.
- Department of Health. Chronic Disease management: A compendium of information 2004. http://www. natpact.nhs.uk/uploads/Chronic%20C are%20Compendium.pdf (date last accessed: 14/12/05)
- World Health Organisation. Innovative Care for Chronic Conditions: Building Blocks for Action 2002. www.who.int/ chronic_conditions/en/ icccglobalreport.pdf (date last accessed: 14/12/05)
- Department of Health. Supporting People with Long Term Conditions. An NHS and Social Care Model to support local innovation and integration 2005. http://www.dh.gov. uk/assetRoot/04/12/25/74/04122574 .pdf (date last accessed: 14/12/05)
- Partnership for Solutions. Chronic Conditions: Making the Case for Ongoing Care 2004. http://www. partnershipforsolutions.com/DMS/ fi les/chronicbook2004.pdf (date last accessed: 14/12/05)
- World Health Organisation. Towards a European strategy on noncommunicable diseases 2004. http://www.euro.who.int/document/ rc54/edoc08.pdf (date last accessed 14/12/05)
- Bodenheimer T, Wagner E, Grumbach K. Improving Primary Care for Patients with Chronic Illness. Journal Of the American Medical Association 2002; 288: 1775–79
- Holman H, Lorig K. Patients as partners in managing chronic disease. BMJ 2000; 320: 526–2
- NHS Confederation. GMS contract negotiations fact sheet - The quality and outcomes framework 2003. http://www.nhsconfed.org/docs/ factsheet1.pdf (date last accessed: 14/12/05)
- Department of Health. The NHS Improvement Plan: Putting People at the Heart of Public Services 2004. www.dh.gov.uk/assetRoot/04/08/45/2 2/04084522.pdf (date last accessed 14/12/05)
- Department of Health. The National Service Framework for Long-term Conditions 2005.
- Department of Health. Self Care - A Real Choice 2005. http://www.dh.gov. uk/assetRoot/04/10/17/02/04101702 .pdf (date last accessed: 14/12/05)
- Department of Health. The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century 2001. http://www.dh.gov.uk/a ssetRoot/04/01/85/78/04018578.pdf (date last accessed: 14/12/05)
- Weingarten S, Henning J, Badamgarav E, et al. Interventions used in disease management programmes for patients with chronic illness - which ones work? Metaanalysis of published reports. BMJ 2002; 325: 925–31
- Congressional Budget Offi ce. An Analysis of the Literature on Disease Management Programs 2004. http:// www.cbo.gov/ftpdocs/59xx/ doc5909/10-13-DiseaseMngmnt.pdf (date last accessed: 14/12/05)
- National Primary Care Development Team. Chronic Disease Management: Unique Care 2004. http://www.npdt. org/15/Unique%20Care.pdf (date last accessed: 14/12/05)
- Dix A. Happy Ever After. Health Service Journal Service Journal 2004; 28–31 2004; 28–31
- Matrix research and consultancy. NHS Modernisation Agency. Learning distillation of Chronic Disease Management programmes in the UK 2004. www.natpact.nhs.uk/uploads/M atrix%20CDM%20Evaluation%20Repo rt.doc (date last accessed: 14/12/05)
- Feacham R, Sekhri N, White K. Getting more for their dollar: a comparison of the NHS with California’s Kaiser Permanente. BMJ 2002; 324: 135-43
- Ham C, York N, Sutch S, Shaw R. Hospital bed utilisation in the NHS, Kaiser Permanente, and the US Medicare programme; analysis of routine data. BMJ 2003; 327: 1257– 61
- National Primary Care Research and Development Centre. Evercare evaluation interim report: implications for supporting people with long-term conditions 2005. www.npcrdc.man. ac.uk/Publications/ evercare%20report1.pdf (date last accessed: 14/12/05)
- UnitedHealth Group. Implementing the Evercare Programme. Interim Report 2004. www.natpact.nhs.uk/ cms/186.php (date last accessed: 14/12/05)
- Kane R, Keckhafer G, Flood S. The Effect of Evercare on Hospital Use. Journal of the American geriatrics Society Society 2003;51: 1427–34
- UnitedHealth Group. Assessment of the Evercare Programme in England 2003–04. www.unitedhealtheurope. co.uk/downloads/executive-summary. pdf (date last accessed: 14/12/05)
- Singh D, Health Services Management Centre, University of Birmingham. Transforming Chronic care: Evidence about improving care for people with long-term condition 2005. www.hsmc.bham.ac.uk/news/T ransforming%20Chronic%20Care%JA N%202005.pdf (date last accessed: 14/12/05)
- Kings Fund. Case-Managing LongTerm Conditions: What impact does it have in the treatment of older people? 2005. http://www.kingsfund.org.uk/ resources/publications/case_ managing.html (date last accessed: 14/12/05)
- Stuck A, Minder C, Peter-Wuest I, et al. A Randomised Trial of In-Home Visits for Disability prevention in Community-Dwelling Older People at Low and High Risk for Nursing Home Admission. Archives of Internal Medicine 2000; 160: 977–86
- Gagnon A, Schein C, McVey L, Bergman H. Randomised Controlled Trial of Nurse Case Management of Frail Older People. Journal of the American Geriatrics Society American Geriatrics Society 1999;47: 1118–24
- Holland R, Lenaghan E, Harvey I, et al. Does home based medication review keep older people out of hospital? The HOMER randomised controlled trial. BMJ 2005; 3300: 293
- Department of Health. Supporting People with Long Term Conditions: liberating the talents of nurses who care for people with long term conditions 2005. www.dh.gov.uk/asse tRoot/04/10/24/98/04102498.pdf (date last accessed: 14/12/05)
- Morrison J. Identifying People at High Risk of Emergency Hospital Admission. BMJ 2005; 330: 266