More and more people in Sweden are living longer lives. There are several explanations for this positive trend. For example, living conditions have improved, there are more robust efforts in place to prevent accidents and unhealthy lifestyle habits, and the healthcare services are constantly improving the diagnosis and treatment of illnesses. The ageing population also means that more people are developing the chronic illnesses that normally accompany advancing years. This basically very positive trend therefore constitutes a challenge to the medical care and care services: how can we meet the increased needs for medical care and care in people with long-term, chronic illness?
The increasing proportion of elderly people in the population also means that the proportion of people of working age is declining. This leads to increasing competition among the various sectors for the available work force, as well as a reduced tax base. Making the best use of the available resources will be vital to development. There is much to indicate that the efforts of the community can and must be developed in order to provide better support to those affected by chronic illness and those around them.
We will try to identify some of the challenges faced when providing care to those with chronic illnesses
The Swedish Agency for Health and Care Services Analysis (Vårdanalys) has carried out an extensive analysis of the current situation in the medical care and care provided to people with chronic illnesses. The aim is to obtain a clearer understanding of some of the challenges that the healthcare, medical care and care services – as systems – need to deal with in order to meet the needs of this target group. It is our hope that this documentation will provide the foundation and stimulation for a discussion on the initiatives and areas of prioritisation that need to be implemented in the area, at both regional and national level. We also hope that the documentation will act as a base for the continued monitoring of how the medical care of people with chronic illnesses is progressing.
The analysis is based on a large number of data sources
In this report, we have chosen a broad definition of “chronic illness” that includes both chronic illnesses and long-term conditions such as severe hearing impairment, severe visual impairment and paralysis. This choice of definition means that the difficulties caused by the illnesses or conditions may be anything from relatively mild to very severe.
The analyses, too, have been based on a broad approach by collating information from a large number of available data sources. The analyses are based on national data on sickness absence, disability pensions and sales of pharmaceutical products. In the absence of any national sources, healthcare statistics from two medium-sized county councils in Central Sweden and care statistics from 14 municipalities have been analysed in order to describe the status of the contact between the medical care and care services and people with chronic illness. An analysis has also been conducted of patients’ own perception of their health and medical care on the basis of a current, international population survey. These quantitative analyses have then been supplemented by interviews with experts and care providers in order to obtain a deeper understanding of possible areas for improvement. The analysis has generated a number of main conclusions:
Many people have chronic illnesses and a large number of players are involved in their medical care and care
- Chronic illness occurs in almost half the population and accounts for the majority of healthcare and health insurance costs
In the county councils studied, chronic illness occurs in a large part of the population: 44 per cent of the population, including one in five people under the age of 20, have been given at least one chronic diagnosis over the past three years. Most of the resources of the healthcare services are aimed at this group: they account for 80–85 per cent of healthcare costs and, based on the cost per person of this healthcare, those with chronic illnesses use four to six times more healthcare resources per individual than those without any chronic illness. Chronic illness likewise accounts for most of the cost of allowances for sickness absence.
The fact that the group of people with chronic illness accounts for almost half the population, and that most of the efforts of the healthcare services are aimed at them, mean that it is important to look at the picture of chronic illness in more refined terms and gain a deeper knowledge of how medical care and care services should be run in order to meet the requirements of this heterogeneous group.
- Multiple morbidity is a common occurrence, and just over half of all appointments with doctors at emergency clinics are by people with two or more chronic illnesses
Multiple morbidity is a common occurrence, and not only in the elderly: a quarter of the population in the county councils studied have two or more chronic diagnoses. A good deal of healthcare targets people with multiple morbidities: people with at least two chronic illnesses account for 50 per cent of the overall costs of healthcare and just over half of all appointments with doctors at emergency clinics. Certain illnesses occur so often together that it is more common for the combination to occur than for one of the illnesses to occur singly. For example, people with metabolic disease are three times more likely to have heart disease at the same time than to have metabolic disease alone.
- The majority of elderly people have several chronic illnesses, particularly elderly people with care initiatives in place
Chronic illness is common in elderly people: 85 per cent of people over the age of 65 have at least one chronic illness, and 66 per cent have two or more. People with municipal care arrangements have chronic illness to an even greater degree (90 per cent).
- The primary care services provide a large part of healthcare to people with chronic illnesses, though the emergency clinics play a significant role
Only one in five people with chronic illness will receive inpatient care during a year. A large proportion of those with chronic illness have some form of contact with the specialised healthcare services, though over half of all doctor’s appointments are in primary care and a third of these people have contact with only the primary care services during a year. This means that most of the healthcare for chronic illnesses is provided by patients and their close relatives themselves. However, the emergency clinics play a large – possibly excessively large – role in the care of chronic illness: one in ten doctor’s appointments by people with chronic illness takes place at an emergency clinic, while one in twelve people with chronic illness have made two or more emergency visits in a year.
The care of people with chronic illness is not sufficiently centred on the patient
- Healthcare initiatives for people with chronic illness – particularly those with multiple morbidities – are not sufficiently well coordinated
Almost a third of those with chronic illness (more than a tenth of the population in the county councils studied) see a doctor at two or more specialised clinics during a year, and many more than this have contact with both the primary and specialised healthcare services. In other words, for a large group of patients there is a great need for successful coordination among the various healthcare providers. Currently, this cooperation is frequently not working. Just over 40 per cent of people with chronic illness state that their primary care doctor was not aware of what had been done by the specialised healthcare services, while over 70 per cent state that they have not received any help from the hospital in booking follow-up appointments even though they have needed it. Medical care is often still run on the basis of organisational divisions rather than the needs of the patient, which makes opportunities for assigning overall responsibility more difficult. Even though legislation and other binding regulations impose requirements on healthcare providers to coordinate the care they give, in practice the healthcare services place great responsibility on patients (or their close relatives) to coordinate their own healthcare.
- The patient’s own strength and capacity are not used to a sufficient extent
If far too much responsibility for coordination is placed on the patient, at the same time there is far too little focus on improving patients’ opportunities to be involved and active in their own healthcare (apart from logistics and booking appointments). People in Sweden with chronic illness consider themselves less involved in their own care compared with patients in other countries. The healthcare services do not fulfil their own obligations according to the existing legislation and do not, for example, succeed in providing patients with individually tailored information about their illness and treatment at the right time. Nor do the healthcare services use the tools on offer to increase patients’ opportunities to influence their own illness. There is a great potential for improvement in terms of teaching patients, for example, about important signs of deterioration and when to seek (and when not to seek) medical attention.
- The care provided for chronic illness is not sufficiently proactive, and places too little emphasis on preventing deterioration and emergency care
The care provided for chronic illness is not sufficiently proactive, either in terms of preventing complications or preventing deterioration and the need for emergency care. For example, almost four in ten people with chronic illness indicate that they have attended the emergency clinic at some point during the past two years for a condition that they feel could have been handled by their usual doctor had he or she been available. It should be possible to use proactive measures – for example, targeted invitations for check-ups or follow-up telephone calls following hospital appointments – to a greater extent for people with chronic illnesses or in poor health. Too often, the healthcare services are content to react to existing or emergency needs rather than predicting and avoiding unnecessary complications, for example.
The care of certain groups faces particularly major challenges
- People with multiple morbidities are a particularly exposed group whose medical care shows a number of shortcomings
People with two or more illnesses have a greater need of medical care and meet a larger number of healthcare providers. There are several challenges in terms of the care provided to them. Coordination often fails for these people, with the risk that the patient will “fall between two stools” and that no healthcare provider will take overall responsibility. The interaction between medicines and incorrect medicinal treatment in the case of impaired kidney function are two important areas for improvement in general, but this applies above all to the large group made up of elderly people with multiple morbidities. The lack of awareness of the occurrence of impaired kidney function (and a lack of procedures for its detection), and a lack of knowledge management in terms of how to adjust medicinal treatment, both contribute to the incorrect use of medication in cases of impaired kidney function.
- People with mental illness often also have a somatic illness and there are several shortcomings in the care provided to them
A severe level of excessive somatic morbidity can be seen in people with mental illness: diagnosed hypertension, metabolic illnesses and heart disease are all more than twice as common compared with the population as a whole. It is well known that people with mental illness do not always receive entirely satisfactory somatic medical care. One explanation is probably that people who have mental and somatic illness at the same time need care within the specialised mental health services and in primary care, and in both places a lack of expertise has been described as far as the other is concerned.
Knowledge support is made more difficult by deficiencies in data access and guidelines
There are several factors affecting the opportunity for knowledge management. Data access and guidelines are two examples where our results point to shortcomings. For one thing, there is a lack of information on primary care in the Swedish National Board of Health and Welfare’s (Socialstyrelsen’s) health data register and in existing quality registers. The Swedish Social Insurance Agency’s (Försäkringskassan’s) register contains information about one diagnosis per sickness absence case only, which makes an analysis of multiple morbidity more difficult. For pharmaceuticals, the central registers contain no information on diagnoses, which makes it more difficult to analyse which pharmaceutical products are used for which illnesses. There is a lack of documentation in large areas at national level to describe the use of aids among people with chronic illness. This analysis of the current situation shows the need for data to enable a structured and regular analysis of the medical care and care provided to people with chronic illness.
The knowledge support to the healthcare services is also insufficiently tailored to multiple morbidity. The current focus of the work on knowledge generation is on individual diagnoses, which increases the risk that the needs of those with multiple illnesses will be overshadowed. There is therefore a need to review the knowledge management process and to consider how national guidelines could be developed and shaped to provide better support to healthcare staff and patients in the actual care situation than is currently the case. There is also currently a lack of national guidelines for a number of common illnesses and for the treatment of combinations of illnesses.
Measures are required at both regional and national level to create more patient-centred medical care for people with chronic illness
The results show that the medical care services face a significant challenge in better meeting the needs of people with chronic illness. Even though this has not been the focus of this study, the results raise questions as to how the medical care services could meet the requirements of legislation and other binding regulations more effectively than is the case today in achieving patient-centred care, including obligations in terms of coordination, continuity, involvement and information. We believe that continued measures are required at both regional and national level, and below we provide a number of concluding reflections on how to continue the work on developing this.
The Government and the county councils need to consider how to develop the information flows, the responsibility relationships and incentive structures in order to:
• strengthen the collaboration between clinics and operations, both within the county council and between the municipality and the county council. The task of primary care is to maintain cohesion in the medical care provided, but it lacks the tools and mandate required to shoulder the role of project manager for patients with one or more chronic illnesses. There is a need to improve the transfer of information, for example via the patient record system, so that staff – together with patients and their relatives – have an overview of and are able to coordinate the medical care provided.
• better support and use the strengths of patients themselves in order to increase both their involvement and that of their close relatives in influencing the structure their medical care.
• promote proactive work for the group of people with chronic illness and poor health, in order to reduce the need for acute medical care. Among other things, this is a case of developing tools to identify those groups of patients where the initiatives are of the greatest importance.
• increase the opportunities to translate new knowledge and evidence into everyday clinical life. This may, for example, involve taking the work on national guidelines further in such a way that staff in the care situation can take on board the recommendations contained within them.
• improve the opportunities for monitoring performance, processes and outcomes of the medical care given for chronic illness, not least in primary care. There is a need to increase our knowledge about quality and equality in medical care and care for people with one or more chronic illnesses.