Disease management: a proposal for a new definition

As mentioned by Guus Schrijvers in his recent editorial [1], the term ‘disease management’ is used in different contexts and has several meanings. Besides, given the proliferation of expressions containing the word manage(ment), it is often misinterpreted, especially in non-English speaking countries. We agree that it would thus be very useful to agree on a common and consensual definition of disease management. In addition to the definitions quoted by the Editor, we found that the contribution of the American Heart Association experts panel to principles, recommendations and taxonomy for disease management is worth considering [2]. Moreover, a comprehensive definition and taxonomy may also help considering properly the programmes that fulfil the definition of disease management without being labelled as such.

We propose three elements to foster this discussion: the first deals with the elements considered in the definition; the second addresses the terminology used and the third is about a pragmatic operational definition.

There are some important elements of disease management programmes that we propose to include in the suggested definition. First, it might be useful to acknowledge more explicitly that disease management programmes should be community-based, allowing access to such care to those in need. Second, following the definition of the Disease Management Association of America [3], as well as the components of the Chronic Care Model [4, 5] and of the American Heart Association [2], the proposed interventions and processes of care should be evidence-based. Third, it would be appropriate to make it clear that care for people with one or several chronic diseases are stratified according to the severity of the disease and patients’ needs. An additional clarification could be the fact that the multidisciplinary approach is not only systematic, but also structured (i.e. described, organized and planned), meaning that it goes beyond the usual activities of a single practitioner referring a patient to a specialist or another healthcare professional. Finally, appropriate process and outcome measurements should be routinely performed and analysed [3, 6].

Also, while it is of key interest to come up with a satisfactory definition of disease management, it might also be appropriate to reconsider the terminology used. Since disease management was initially developed in the USA and with an important participation of the healthcare industry, the term is often associated with a negative representation. In addition, clinicians are rather refractory to new types of care, particularly if they are structured and community-based. For instance, they often imagine that all patients with a particular chronic disease could be offered the same combination of elements. Therefore, we suggest taking some distance from the initial expression ‘disease management’ and using a nomenclature that better reflects the scope of the concept. What about ‘Chronic disease management’ or ‘Chronic disease prevention and management’, to give two examples that put more emphasis on chronic diseases and, for the latter, on the combination of preventing new cases or complications while treating existing cases, relatively to the ‘management’ issue.

Lastly, alongside this work on the definition of disease management, it would also be very helpful to focus on a pragmatic operational definition. Indeed, because there is no agreement on the definition of disease management, reaching consensus over what might be an acceptable operational definition of disease management is uneasy. This latter issue is important, for example, when one need to find primary studies targeting disease management and does not want to reduce the selection of articles to those using the term ‘disease management’. In fact, Ouwens showed that such programmes have a wide variety of definitions and components [7].

Adding these elements, we would adapt the definition as follows: “Chronic disease prevention and management consists of a group of coherent interventions, designed to prevent or manage one or more chronic conditions using a community wide, systematic and structured multidisciplinary approach potentially employing multiple treatment modalities. The goal of chronic disease prevention and management is to identify persons with one or more chronic conditions, to promote self-management by patients and to address the illness or conditions according to disease severity and patient needs and based on the best available evidence, maximizing clinical effectiveness and efficiency regardless of treatment setting(s) or typical reimbursement patterns. Routine process and outcome measurements should allow feedback to all those involved, as well as to adapt the programme”.