Health care policies in European countries are confronted with increasing numbers of chronically ill patients due to epidemiological and demographical transitions, and life saving medical technology. The impact of chronic diseases on public health and health care will lead to transformations in policy targets.
The main targets of the care for the chronically ill are directed at effective prolongation of life, accompanied by the best possible quality of life, and the best possible social integration. Measures to ensure high quality health care may considerably benefit the health and quality of life of the chronically ill.
At present public health policies are primarily focused on specific diseases and there is an urgent need for governments to develop a health policy directed also at common issues affecting the chronically ill, in particular diminished quality of life, multi-morbidity, complex health care demands and long-term care dependency.
The objectives of the strategy for high quality care include:
- to ensure equity in health care, and availability of health care;
- to achieve justifiable resource allocation;
- to improve the quality of life of chronic patients;
- to provide integrated comprehensive care, encompassing prevention, cure and care;
- to guarantee continuity and coordination of care;
- to reach a balance between the growing demand and the limited supply;
- to promote the participation of patients in health care and strengthen their role;
- to support informal care givers;
- to raise awareness by providing information, education and training;
- to stimulate fundamental and care research;
- to provide a further impetus to implement standards for high quality care of the chronically ill.
Chronic diseases are prominent among the elderly population but younger age-groups are also confronted with chronic conditions. They encompass a wide range of chronic somatic and psychiatric disorders. Chronic disorders and conditions have a differential impact on patients and societies and the chronically ill take different places on the continuum from health to illness and from independent to dependent living, and hence have varying health care demands.
Measures aimed at ensuring high quality care encompass the whole continuum of care, including health promotion, prevention, medical care, rehabilitation, nursing care, psychosocial support, aids, informal care and support from fellow patients. In particular, health services activities for the chronically ill are strongly interrelated with social services activities.
Concept of the "chronically ill"
Chronic conditions encompass a broad range of diseases and disorders which are irreversible, incurable, without a prospect of recovery, and which are on average of a long duration. Obviously, there is a wide variation in the consequences of chronic conditions for people's daily functioning and health care. Not all persons with a chronic disease are ill or limited in their daily functioning, nor are they all extensive users of health care. Some patients, however, are disabled to such an extent that they are fully dependent and need institutional care in nursing homes. Persons with chronic diseases take up different positions on the continuum from health to illness and from independent to dependent living, and hence have different health care needs. Identifying these needs is important in developing models of appropriate chronic care.
The group of chronically ill persons differs in several respects from the group of handicapped persons. An analytic framework for the discussion of the similarities and differences between both groups could be derived from the WHO model of the International Classification of Impairments, Disabilities and Handicaps (ICIDH). As long as it sufficed to record merely the occurrence of diseases in terms of either recovery or fatal outcome, the International Classification of Diseases (ICD) provided a valuable instrument. A classification of the long-term non-fatal consequences requires different concepts: the ICIDH scheme. The definition of chronically ill persons includes the path from disability to handicap. Chronically ill persons could be considered as handicapped if they are also at a societal disadvantage (e.g. many stroke patients). Likewise, not all handicapped persons can be regarded as chronically ill, if the handicap is not directly related to chronic diseases (e.g. persons with hearing or visual impairments).
The broad perspective
The Recommendation focuses on common issues of the chronically ill in relation to health care.
- Focus on common issues
Studying the shared problems of chronically ill persons is an essential change of perspective. It implies a problem definition that crosses the boundaries of care services. Obviously, each chronic condition is accompanied by its specific problems. However, the difficulties which many chronically ill persons have to face in every day life have a lot in common. In identifying generic issues we have to redirect our focus from specific diseases to the common consequences of chronic diseases. We need to focus on complications and co-morbidity, functional impairments, long-term disability, psychological distress and diminished quality of life. Early therapeutic action should be taken to limit the effects of the chronic diseases and to prevent resulting handicaps.
- Focus on health care
The shared problems of chronically ill persons are related to a broad range of domains. An integrated approach demands efforts from the health sector, social sector, research community, labour sector and many other sectors.
Chronically ill persons are an important target group of health care. They need health care for a prolonged period of time and from a wide variety of health care services in the field of medical care, rehabilitation and long-term care. The health care demands are not only increasing in quantity but also in complexity. The conventional distinctions between prevention, cure and care, between primary and secondary medical care, and between professional care and informal care seem to dissolve in the face of the complex health problems of chronically ill patients. These persons need high-quality health care, that may not bring about cure but must aim to improve quality of life.
Main areas of concern
The Recommendation identifies the following areas of concern in providing appropriate health care to chronically ill persons:
a. equity and availability;
c. continuity and coordination;
d. patient organisations;
e. education and training;
(2) International experiences in the field revealed a number of obstacles related to financial barriers in funding and insurance and compulsory private contributions of patients. These financial barriers are a real threat to assuring equity in access to health care.
(3) Research has consistently demonstrated that chronic diseases are more prevalent among the elderly, among females and among lower socio-economic groups. Socio-economic health inequalities persist, despite the affluence of the welfare state, the high quality of health care and the benefits of social security schemes. Health policy should focus on reducing inequalities in access to health care, in particular to protect the vulnerable groups.
(4) In all member countries long waiting lists and waiting times are observed for a range of services. In long-term care problems are reported for home care, geriatric services and nursing homes. In acute hospital care problems are reported for hip fracture surgery or cataract. There is an urgent need to develop and establish clear criteria on how to manage these problems, to guarantee equal access to health care.
(5) To tackle the problem of waiting lists in long-term chronic care alternatives should be developed. In this field promising initiatives were reported, e.g. expansion of day care programmes, reimbursement of family care-givers, involvement of non governmental organisations, reinforcement of volunteer's actions.
(6) Chronic patients should receive comprehensive care, covering all necessary health services, both long term care and acute hospital care. Health authorities should ensure that in the delivery of health care chronic patients have the same rights as other patients. Particular attention should be paid to possible discrimination.
(7) To meet the specific care needs of chronically ill persons a broad spectrum of services should be provided at a local level. The provision of care should be based on the comprehensive needs of individual patients. Extended care facilities at the bottom of the health care pyramid will strengthen the autonomy of the chronically ill.
(8) In looking for strategies to deliver comprehensive integrated care we could distinguish prevention, "cure" and "care", which in the continuum of chronic care have become inextricably entangled. In many countries public investments are concentrated on acute hospital care. Care-oriented services are under-developed. The challenge for public policy is to redress the balance. The health care needs of chronically ill persons require cure-oriented as well as care-oriented services, which are well balanced.
(9,10) Health problems of the chronically ill are strongly interwoven with social problems, e.g. with regard to education, work, social security, housing or income. In many countries health care systems operate separately from social (welfare) systems, at organisational level as well as patient level. High quality health care requires a further intersectoral cooperation.
(11) We need to focus on continuity because chronic care encompasses a wide variety of disciplines and services. The role of general practitioners is well defined in several European countries. General practitioners could ensure the continuity of care.
(12) Chronic care implies a multi-sectoral and multiprofessional collaboration between primary and secondary medical care, between medical and non-medical care and between professional and informal care. To secure continuity of care between the several sectors and to develop networks of care-givers the role of primary care teams should be reinforced.
(13) Reimbursement of care givers is often based on fees for services. Efforts and activities aimed at continuity and coordination of care form no part of the financial system. To ensure that these activities will be integrated in the practice of health care, health policy should envisage financial incentives.
(14) Continuity of care requires a proper interface between home care, hospital care and institutional care. In improving continuity various approaches have been reported: putting a case manager in charge of care for chronic patients or developing shared care packages to smooth the boundaries between the health sectors.
(15) Supporting informal care givers constitutes an inextricable part of the health care for the chronically ill. It includes practical, social and emotional support. The majority of the care for chronic patients is provided by family members, particularly partners of patients. At present, various developments are being reported in this field, e.g. respite care (temporary replacement of informal care in the form of temporary admission to a nursing home or day care).
(16) To assure continuity in the long term it is necessary to develop an adequate system of documentation and registration. On the basis of these data continuity could be monitored and evaluated.
(17) Quality assurance of health care is an increasingly important topic. The assessment of the quality of chronic care is more complicated because of the diversity of involved disciplines and services and the heterogeneity of patient populations. More attention should be paid to establishing indicator systems in assessing the quality of integrated, comprehensive care.
(18) Patient organisations make an important contribution to both the empowerment of patients and the improvement of health care for the chronically ill. However, patient organisations are not as yet well established in all member countries.
(19) The "experience" expertise combined in the patient organisations is essential in adapting health care to the specific needs of the chronically ill. This kind of expertise should be included in public campaigns, educational programmes and research programmes.
(20) Involvement of patients in policy development implies that their organisations are a serious partner in advisory functions and decision making bodies.
(21) Chronically ill diseases have far-reaching consequences for the quality of life of patients. Chronic patients are confronted with complex deficiencies in physical, psychological and social functioning. Public information is necessary to cope adequately with chronic illness.
(22,23) Elaborate efforts are needed to reform basic education, training in clinical practice and management to deliver high quality care with well-trained, motivated staff. Continuous training should be aimed at improving therapeutic and supportive skills to cope adequately with the needs of the chronically ill.
(24) To strengthen the required multidisciplinary collaboration the traditionally mono-disciplinary educational programmes should be integrated and made compatible with each other.
(25) Chronically ill children require a special approach, particularly with regard to their physical and mental development
(26) Research should focus on highly prevalent diseases such as arthrosis, heart diseases, diabetes, stroke, depression or dementia but should encompass also rare diseases.
Epidemiological research is needed on the causes (etiology) and consequences (disease impact) of specific diseases. Special attention should be paid to the phenomenon of multipathology: co-morbidity is a highly prevalent phenomenon among the (elderly) chronically ill.
To get more insight into how to cope successfully we need to unravel chronic disease processes and coping processes.
Research should focus on the distribution of chronic diseases, in particular on health inequalities and on effective interventions to diminish these inequalities. These inequalities are related to age (higher prevalence among elderly), gender (higher prevalence among females), socio-economic status (higher prevalence among lower socio-economic groups).
To deepen the insight into causes and consequences longitudinal studies with a long time horizon are needed.
Most cost-effectiveness studies and most subsidies are directed at innovative programmes, looking for new methods and approaches. To improve the quality of care, research and programmes should also focus on well-established care programmes, the effectiveness and efficiency of which might have been never evaluated.
More knowledge is needed about the efficacy of intervention programmes to cope adequately with chronic illness and to support the chronically ill and their families.
More comparative studies and exchange of results are needed to strengthen high quality care for the chronically ill in member countries.
A single entry point and information guidance is needed because of the multiplicity of actors involved in chronically ill care, complicated liaisons and interrelations between different care providers and different levels of services.
It is important to remember that patients and citizens have the right to shape the policies and decide about priorities at the policy development stage, and not only to comment on the implementation of programmes decided in their absence.