Chronic diseases and their challenges to health systems

Key messages & Research issues

• Clarification about the specificities of and the variety among CDs is helpful for the orientation of action. Specificities relate to the diseases, to the patient and to the aims of care.
• Use the term ‘chronicity and continuity of care’, in contrast to ‘episodic illness and care’. The differences in kinds of care are both quantitative and qualitative.
• Organisation of quality care for CD is an opportunity to assess and reshape the functions of a health (care) system and the division of tasks between levels of care and to rethink the concepts of primary health care, participation and empowerment.

What are chronic diseases?

Although the need for action and pragmatism is prevailing among many of us, it is useful to be explicit on what the issue at stake is. There are many different (complementary) perspectives possible on what is a Chronic Disease (CD). Striving for one common definition is neither feasible nor useful, but clarification about the specificities of and the variety among CDs is helpful for the orientation of action. One premise mentioned is that the conceptualisation and classification of CDs should respond to the local context and needs of actors in the HS.

‘Disease’ - biomedical, psychosocial, individual and collective dimensions

Who defines what a ‘disease’ is? Patients, communities, professionals, researchers and politicians have different methods of doing so. The word ‘disease’ does not cover the perception of the patients, as does the word ‘illness’. Both definitions limit the problems to an individual bio- psychological scope, but leave out some important collective and social problems affecting life and wellbeing of communities, like poverty or violence. But how far do we go in our labelling a phenomenon as a CD/problem? Do we view disabled or aged persons as ‘sick’ or is it part of the normal variability among mankind? What about ‘unproductive adults’ or ‘socially non- adapted individuals’? A reflection on what is ‘normality’ leads to the statement that wellness and disease are part of a continuum. Definitions of ‘normality’ are strongly determined by the social and cultural context. From a pragmatic point of view, ‘abnormality’ is defined as a deviation from an (objectively determined) value and the (subjective) experience of patients is another, not less important, matter. However, the epidemiological definitions of ‘normality’ are also subject to debate. In addition, the perception of the patient might determine his search for health services, as is illustrated by the observation that a malnourished child is rarely a reason to visit a health centre in many African settings.
Scientific developments also influence the definitions. The availability of new pharmaceuticals to influence biomedical risk factors in an early stage, the increasing expertise to identify risk genes and the increased knowledge about social determinants of health influence the perception of (the acceptability of a certain state as) ‘normal’ or not. Boundaries between risk factors (e.g. impaired glucose tolerance) and diseases (e.g. diabetes) become diffuse.
Alternative criteria could be the need for long term support or the presence of suffering. Along these criteria, Alzheimer’s disease might and Down’s syndrome might not be a CD. In many European countries, the frail elderly are an increasing group of people needing care. If we return to the collective dimension, can we call a society that constantly exposes its members to toxic environments a chronically ill society?

‘Chronic’ – what does it mean?

‘Chronic’ relates to the time-span of disease development /presence, but where and how are the boundaries defined? Acute and chronic diseases are ends of a continuous spectrum. Many CDs have a slow, insidious onset. When do CDs like drug dependence or obesity begin? Are asymptomatic periods, e.g. in autoimmune diseases, part of a CD? Does ‘chronic’ mean life-long? If so, then the only CDs are those without a cure. Scientific developments change the chronicity of diseases. On the other hand, CDs also have acute episodes. We need a continuum of interventions for a continuum of deterioration. We could use the term ‘chronicity and continuity of care’, in contrast to ‘episodic illness and care’. The differences in kind of care needed are both quantitative (longer time-span, more resources needed) and qualitative (a more important role for the patient, a combination of biomedical with other factors). The metaphor of two cars going on a long journey might be useful: a brand new four wheel drive (a healthy person) and an old pick-up (a person with a CD) aim for the same destination. The journey towards this destination will be very different for each car. Along the road, drivers can make use of technical resources (health services) for maintenance and for repair, but in the greater part of their journey they will be on their own.

Classification

The conceptualisation of CDs influences their classification. The dominant biomedical paradigm considers diseases as caused by external factors, based on the knowledge about infectious diseases, and sees the human body as a collective of various organs that can be affected by (multiple) specific diseases. Etiologic and epidemiological classifications follow this line. An alternative paradigm, the systemic and holistic one, looks at patients as persons with their particular history and their belonging to a specific social group and culture. Disease is seen as the failure of internal balance or adjustment to context conditions. In the holistic paradigm, people don’t fight diseases, but manage them, thus changing the roles of health professionals and patients. This paradigm focuses on processes (including personal/social history) and on the person, more than on the disease. It is less concerned with a particular disease and its distinguishing features, but looks for patterns in the variety of diseases and classifications according to more comprehensive, systemic or syndromic groups, recognizing their multi-causality (e.g. food related chronic diseases). It also means that interventions include medical treatment, behavioural actions, inter-sectoral actions and political action to address social determinants. For the organisation of prevention, it might be useful to distinguish diseases in the way they progress, e.g. the occurrence of different stages, danger of acute deterioration, etc. There are still other classifications, based on other criteria, such as the burden of disease (usually expressed in QALYs or DALYS) or their economic or social impact (stigma). Underneath the criteria of classification systems are different political views on the approach to disease and the response of the health system.

The role of a health system in relation to CD

Reflecting about the role of HSs implies thinking about the relationship between people and the HS and the role of participation. Different paradigms include the classical schisms between the ‘right and / or duty’ of people to participate. Who should be helping whom and who is a resource to whom? In pluriform HSs, the answer is mixed, depending on the situation and the actors. Organisation of quality care for CD is an opportunity to assess and reshape the functions of a health (care) system and the division of tasks between levels of care. This can only be useful, if based on good analysis of context and if structures are created with accountability vis-à-vis the population and communities.
Although views about the role of the HS in relation to CD might be very holistic, the focus of the workshop is on care for chronic diseases. Care for CDs probably holds somewhere between cure, preventing deterioration and support of impaired or weakened functions, focusing on the functional outcome and capacities of people. It can be argued that Chronic Disease Care (CDC) has characteristics different from episodic care. These relate to specificities of the diseases (CDs often have an uncertain prognosis, and feature exacerbations and asymptomatic periods), to the patient (who has an important influence on course of disease) and to the aims of care (management of disease instead of cure, balance of disease management with other life activities). The recognition of these specificities has consequences for the organisation of care. Important aspects are the involvement of patients in their own care, the coordination and organisation of care and the involvement of other actors and disciplines. Since these aspects are generic to many CDs, the differentiation between different CDs is less relevant for the organisation of CDC. Especially in settings where resources are scarce, a core question is how to organise CDC in a feasible and sustainable way.
Other functions of the health care system were mentioned: to detect people with a CD; to prevent and manage the progress of CD (important in relation to cost–rationing) and being responsive to the needs of people. In the care relationship between care provider (health services as a whole or the individual health provider) and the other party (the community or the individual patient), we should address the power balance between the two (1).

Contributions by Karen Pesse, An Piessens, Patrick Kosteren, Grace Ku, Josefien van Olmen, Guy Kegels

Reference List

(1) van Olmen J, Criel B, Devadasan N, Pariyo G, De Vos P, Van Damme W et al. Primary Health Care in the 21st century: primary care providers and people's empowerment. Tropical Medicine & International Health 2010.