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Organisation of Health (Care) Systems for Chronic Diseases

Key messages & Research issues

  • The burden of CD in LMIC is high, but the lack of adequate and reliable data hinders a more precise overview of the extent and distribution of the problem.
  • The present HS response for CDs in many LMIC is characterized by: a public response focused on prevention programmes; little consideration for the organisation, coordination and regulation of health care services; routine medical practice without attention, the opportunity and resources for the specific aspects of chronic care; and large out of pocket expenses for patients.
  • Useful models for chronic care exist, but they need to be adapted to the context of real HS in LMICs. Differentiate functions of care and identify actors in care at different levels and between actors at the same level in the HS.
  • Search for the right balance between standardized and customized approaches to care for chronic patients. Combine the clinical and public health perspective in realistic answers to the challenge of ensuring universal access to continuous CDC.

The present response

At present, there is a big knowledge gap about how HSs deal with CDs. But situation analysis from different contexts highlight a number of common problems. The burden of CD is high especially in urban areas and also among the poor. But the lack of adequate and reliable data hinders a more precise overview of the extent and distribution of CDs in the population. In many LIC, there is little awareness in the community about the existence of CDs, risk factors and prognosis, symptoms and possibilities for management. This contributes to the late presentation of patients.
The response of HSs comprises mainly the development of national programmes to manage categories of CDs. Realisation of those programmes is difficult due to lack of budget, lack of integration etc. The routine practice is that chronic care in the public sector is mostly provided at secondary level, based on a medical model with very little time, place and personnel for communication. There are limited referral options from the first to second line, because of geographical spread, vertical programmes and fragmented structures. The gap in public provision at the first line is filled by private provides of all kind. Their care, especially of informal providers and drug-sellers, is usually restricted to the provision of symptomatic medicine for a short term, leading to large out of pocket expenses for patients on a regular basis. Fragmentation and segmentation are a consequence of inadequate public funding and a lack of regulation or coordination, both at the policy and operational level.
Besides the inadequate number and their incomplete knowledge and resources, the attitude of many health workers is an obstacle to better quality CDC. While private for profit providers have mixed motives in the offer of CDC they give, some public health workers tend to adopt a fatalistic attitude towards patients. HSs are traditionally centered around physicians, with a minimum involvement of other actors. In the prevailing medical and bureaucratic culture of these HS, the potential of people themselves to be involved in their own care and of other community organisations is under-utilised. The anticipated interaction between doctors and the population in the designated participation structures does not materialise.

(Re)organisation for a more adequate response

Chronic Disease Care models

A basic premise in CDC is that the patient plays an important role in his own illness management. The most widely used models for the organisation of care for CDs are based on the Chronic Care Model (CCM) of Wagner (1). The CCM is useful to look at the level of a health care organisation. It describes how to organize health care at this level, recognizing the organisation as part of the community, and pointing at six main tasks: self-management support, delivery system design, decision support, clinical information systems, health service reorganization, policies and resources). This (re-)organisation should aim at productive interactions between an informed activated patient and a prepared, proactive practice team. The WHO has made an adapted and enlarged version of the CCM for low income countries (Innovative Care for Chronic Conditions (ICCC)) (2). Their aim is to make it relevant and acceptable for LIC, to be useful in different contexts, for many different CDs. Identifying actions for actors at different levels in the HS, it is especially useful for planners.
The documentation about implementation of these models in practice of CD care is limited to high income countries (HIC). This evidence shows that application of (parts) of the CCM leads to better quality of care, but it is difficult to disentangle the effects of the different components of the intervention. The number of elements implemented and the extent of implementation of these elements vary, depending on many contextual and organisational factors. Several other pilot experiences in low and middle income countries (LMIC) are described in the literature, which usually follow a biomedical approach and are health-service based. These pilots do contain certain elements of the CCM approach, such as training and guideline development, task delegation and decentralization, the development of patient registers, adherence support and self-management.
The models are neither complete nor a prescription on how to organize care. Later authors observed that the models lack, for instance, attention for community based primary prevention, provision of long-term care, and suggestions on how to deal with the progressive aspect of CD. To become useful, the models need to be adapted to a real HS. The confrontation of the model with reality calls for knowledge of the context elements, of the strengths and weaknesses of the implementing organization and of the available mechanisms to implement change. The first step is to map and evaluate ongoing practices through the glasses of the models, after which one could see how the model can be applied. High quality CDC in limited resource settings needs to be a balance between a standardized and a customised / contextualized approach.

Differentiate functions of care

Since CDC is very broad, it is useful to differentiate functions of care, in order to get a good overview of the different aspects of care which are needed. The following functions are part of CDC:

  • timely diagnosis: use of (community) screening and other methods;
  • clinical / medical management, including pharmaceutical and supportive diagnostic services and including palliative care;
  • prevention of progression in the individual patient: in our vision, all functions between primary prevention and rehabilitation are part of a continuum, along the progress of the disease;
  • treatment support: including retention in care, self-management and peer support
  • psychosocial support, including the embedding in the local/cultural/religious context
  • dialogue between health services, patients and community, at different levels and about different aspects;
  • disease-specific functions (eg dietician).

 

Identify actors in care

The different functions of CDC can impossibly be fulfilled by a solo operating health provider and will be the result of efforts of different persons, professionals and lay people. Ideally, these people work as a team or have at least regular contact. A wide variety of persons can be involved, such as case managers, clinical staff, staff of other medical services such as the laboratory or pharmacy, adherence counselors, social workers, psychologists, patient organisations, expert patients, peer-educators, family members, community groups, etc. It is good to map actors which are present in the local context who are or who could be involved in the organisation of care. The composition, initiation and coordination of a care team depend on the type of CD and on the local available resources and context.
Since many functions of CDC are generic, there is generally no need for separate teams for specific CDs at the first line. In specific contexts, it might be feasible and desirable to establish separate clinics / teams for groups of CDs with common determinants, probably at the second line. The delineation of functions at different levels in the HS is important. Task-shifting has proven feasible for HIV AIDS, for diabetes and for some psychiatric disorders. Conditions for successful task-sharing are a clear definition of which tasks can be performed at which level and to provide training, guidelines and supervision. In order to have actors function together successfully, it is necessary to improve the capacity especially of the non-medical actors and to sensitize all staff, especially the medical actors, to function in a team. It is also useful to realise the limitations of what can be expected from actors. Medically trained doctors might not be prepared, even after further training and sensitisation, to carry out prevention tasks. Also at horizontal level, there is need for coordination, especially between the public and private sector. Professional associations (if present) might play a role in motivating private practitioners to collaborate with the public sector.

Be realistic

It is easy to be swept away by dreams about the ideal form of care, without taking into account the limited resources in the settings of LMIC and human behaviour resistant to change. Recommendations and interventions need to be relevant, realistic, feasible and sustainable in the context of LMIC. Which strategies to use is very context dependent. For example, while ‘universal evidence’ might say that community screening for early detection of most CDs is not cost-effective, this might be very different in settings with high prevalence. Besides that, community screening can also have additional aims, such as creating contact moments with the community to create a dialogue and awareness. Without losing the clinician’s view of being responsive to individual patient’s demands, we should have a public health perspective, aiming for the biggest gains for the whole population, taking equity considerations into account. Two important issues from that perspective are: how do we ensure universal access to CDC (coverage of health services, timely diagnosis, etc) and how do we ensure continuity of care?

Contributions by Grace Ku, Ahmed Idrissi, Upendra Bhojani, Abiyou Kifle, Faustin Chenge, Jean-Claude Dimbelolo, Stella Nakiwala, Roopa Devadasan, Bart Criel, Everd Maniple, Josefien van Olmen, Guy Kegels

Reference List

(1) Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract 1998 August;1(1):2-4.
(2) World Health Organisation. Innovative care for chronic conditions: building blocks for action: global report. Geneva: WHO; 2007.

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