Main

The main purpose of this review is to attempt to answer an ever more relevant question: Which priorities and strategies could and should be adopted by pediatricians in order to significantly tackle inequality and inequity in the management of pediatric diseases in low–middle-income countries. This issue has become a focal point of epidemiological and public health, due to the many unmet needs and rights of pediatric populations worldwide with special reference to chronic non transmissible diseases (1,2).

The focus here is not, therefore, on providing a further detailed review of what has and is still being published on this subject. Instead, with an eye to the future, we outline the development of some suggestions which hinge on the following three steps:

  • (i) An essential overview of the cultural, institutional and political events which have occurred over the last 20 y and which have produced the current general framework for epidemiology and public health;

  • (ii) A brief evaluation of the epidemiological data which have been accumulating mainly over the last 10 y, in order to quantify and qualify the interaction between the strictly medical components of the disease profiles and their socioeconomic, cultural, and institutional determinants;

  • (iii) A focus on model scenarios of pediatric chronic diseases, specifically chronic kidney disease, which are the most sensitive markers of the interplay between health and society.

General Framework

“The last two decades have brought revolutionary changes in global health…”: an important paper summarizes the radical impact of the globalization process (3). Being principally driven by economic, institutional, and political actors and variables, globalization has transformed the role, the terms of reference, and the perspectives of the world of health. Table 1 shows a synoptic and chronological view of the key events.

Table 1 Actors and events of the two decades which transformed health
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The report on the global burden of diseases (GBD) from the mid-nineties closely followed the World Bank reports, which declared that health systems had become economically too important and societally too critical to be left exclusively in the hands of a specialized agency such as the World Health Organization. In parallel with this important evolution of the epidemiological approach to health planning, in the early ‘90 the creation of the World Trade Organization represented the institutional expression of the directed impact of trade criteria and agencies in the area of services delivery. The economic and technological components of health should be regulated according to norms, which are independent from those which govern the relationships between individuals and peoples, such as, at country level, the competences of national governments and of their constitutions.

The highly conflicting Doha clause, which recognized that public health interests could justify exceptions to the World Trade Organization rules with respect to patents, must be accountable to the World Trade Organization tribunal (4,5).

The GBD-based epidemiology became instrumental in mapping the health needs, which were then adopted by the Millennium Development Goals. Goals which are failing, however, to fulfill the promises with appropriate investments. This gap between commitment and reality coincides closely with the economic-income profiles of the countries and therefore with their capacity to provide health coverage. The massive private involvement in the health sector, either in the name of solidarity, or as a public-private-partnership has become a highly ambivalent protagonist of global scenarios, as it makes the absence of national health plans and commitments appear “sustainable” in some low–middle-income countries (6,7,8).

The publication of the final report of the Commission on Social Determinants of Health (9), which formally underlines the dominant role played by socioeconomic conditions in causing diseases, as well as their nonsustainable burden, coincides with the explosion of the financial crisis, the implications of which, in terms of the dramatic and global increase in inequalities, are too well known and well documented to be further underlined here (10).

In this scenario, the causes and the implications of the partial but significant failures of the Millennium Development Goals have become clear, as well as the methodological limitations and flaws of the GBD representation of the health status of the world. A brand new and importantly revised series of reports from the core group(s), who are the protagonists of the global epidemiological accountability on health, provide the informative support for the two most recent developments in the scenarios in Table 1 :

  • The “discovery” certified and adopted by the UN that nontransmissible chronic diseases play a dominant global role, both from the point of view of their epidemiological relevance and the challenge they impose on the availability of strategic (institutional, even more than economic) resources to allocate specifically in low–middle-income countries (11);

  • The accentuation and the generalization of the debates on what should be a generally valid formula (Universal health coverage) is the most recognized acronym to be adopted globally to assume sustainability to the new development goals (12).

The Epidemiological Scenarios

Materials and Methods

According to the general objectives of the review, rather strict criteria have been adopted for the selection of the pertinent literature.

Against the general framework provided by few very recently published major documents and studies (leaving aside reports of public or private actors and agencies), search and retrieval were restricted to:

  • Studies with a partial focus, at least, on pediatric age problems and diseases;

  • The specific mention, in the title and/or in the text, of the key terms defining sociodeterminants of health/diseases, with a special attention given to inequality/ies and inequity/ies;

  • Reports with data not only from global statistics, but from individual countries, were scrutinized;

  • Only a few of the most representative studies covering high-income countries were selected, while all studies coming from low-middle income countries were considered;

  • Because of the specific competence and the direct involvement of the authors, pediatric chronic kidney diseases were selected as a suitable model of noncommunicable chronic diseases.

The operational definitions of the variables explored in the review are as follows:

  • Inequality: through socioeconomic indicators, it defines the distribution of a population into various strata (mostly quintiles), which assign individuals to a better off (quintile 1) or progressively unfavorable status (quintile 5);

  • Inequity: corresponds most directly to a value definition, as it describes how resources and accessibility to goods which are fundamental rights (e.g., health care) are distributed in a population, according to the criteria which try to bridge (or worsen) the gaps documented in the inequality quintiles.

The General Framework

Four reports (13,14,15,16) have been chosen as highly representative of the enormous amount of data, models, propositions, and controversies produced mainly over the last 3 y in order to accompany, provoke, and discuss the transition into what is called the post-2015 era, with its most likely Sustainable Development Goals.

The report by the GBD groups (13) on the evolution of pediatric mortality in the populations ≤ 5 y of age in 188 countries between 1990–2013 deserves priority not only for the unique richness of its data, but because of the key methodological and public health messages which are provided:

  • Information sources to describe and compare pediatric populations have become progressively more reliable to allow for useful comparisons, across homogeneous groups of populations;

  • The historical trends are globally suggestive of a possible positive progress, but the enormous variability of mortality data between countries foresees that country-specific and targeted programs should be developed;

  • This need is even more important if well qualified and group-attributable socioeconomic conditions are taken into account, besides data on education and income levels which define the quintiles;

  • The noncommunicable diseases appear increasingly important also in low–middle-income countries and are preferred targets for improvements.

The second paper proposed for its general methodological implications (14) is about adult populations, but introduces two issues which are certainly critical for pediatric chronic diseases. The collection and critical analysis of epidemiological data must aim:

  • Firstly, not solely nor principally at describing the past-present situation but at making prospectively documented deductions for a defined future;

  • Secondly, at adopting “avoidability”, in the planning of public health research, which would meet the challenges of inequality, inequity, sustainability, central to this report.

It is necessary to highlight how the authoritative groups who sign the report strongly underline the dramatic scarcity of field and country-based studies, where both medical and nonmedical variables are prospectively collected. This would allow for a truly informative evaluation of chronic conditions, which are by definition highly dependent on factors strictly linked to inequality/inequity, such as accessibility to care, living conditions, or the daily experiences of vulnerable groups.

The other two papers (15,16) must be quoted here not only because of their scientific-policy weight, but because they illustrate in great detail the connections and the concrete implications of the frameworks where epidemiological data must be placed to provide its full informative content, and to guide effective planning and research choices.

Epidemiological Reports Focused on Inequality/ies/Inequity/ies in Pediatric Populations

The material pertinent to our theme has been grouped with the purpose of documenting:

  • The degree and quality of data availability in international reports;

  • The specific profile of “regional” reports on the health status of children, respectively in low income countries, in Brazil and China, as examples of emerging national economies and in model high-income countries.

In view of the substantial comparability of the approach adopted in the studies (mostly epidemiological elaborations on administrative data sources), as well as of the consistency of the results, the presentation of the data is concentrated in the essential data summarized in the Tables, with broader comments in the Discussion section.

Only six reports ( Table 2 ) have been found, over a period of 8 y, which have explored the relationship between the mortality data and nonmedical determinants (with the exception of the national survey reported by Barros et al. (17), which describes the distribution of interventions across quintiles). The consistent finding that mothers’ education weighs as much as (or more) than estimates of income (based on mean country data) mirrors the data available for the management of acute diseases. None of the studies allows for the specific quali-quantification of the care and mortality burden attributable to chronic diseases.

Table 2 Large multinational reports on pediatric inequalities/inequities
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The epidemiological profiles found for individual low-income countries ( Tables 3 and 4 ) are mostly from sub-Saharan African countries ( Table 3 ).

Table 3 Reports on inequalities/inequities in pediatric populations in Sub-Saharan Africa countries
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Table 4 Reports on inequalities/inequities in pediatric populations in Bangladesh and Vietnam
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The model case of Bangladesh ( Table 4 ) is of specific interest because of the results of interventions aimed at correcting (with encouraging results) the inequity component of care, in a country otherwise known for dramatic structural inequalities.

The case of Vietnam (18) ( Table 4 ) appears also puzzling and worrying. Officially no longer a low-income country, with development indicators which are highly promising and a “history” of national solidarity, it is facing the widening of an inequity gap in terms of maternal health care utilization, which is specifically evident against ethnic and vulnerable groups.

Field and ad hoc studies are essential in these countries, both to surrogate the unavailability of reliable administrative data sources, and to explore the heterogeneous and complex spectrum of the factors which cause and maintain inequality/inequity and make sustainability a pure play of chance.

The few country-centred reports confirm the main GBD and other international reports in underlying that the positive global trends are far from being applicable to all countries, where improving or worsening outcomes are intertwined with the instability of the general country conditions.

Brazil ( Table 5 ) could certainly be considered a special and significant case, as there is a long series of reports documenting the difficulty of intervening to overcome gaps in inequalities and inequities measured in health. As a whole, Brazil remains one of the countries with extreme and polarized levels of inequality, with extensive exclusion of fragile populations.

Table 5 Reports on inequalities/inequities in pediatric populations in Brazil and China
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The only report available so far from a country like China (19), which has been the protagonist of dramatic and rapidly evolving socioeconomic transformations, is consistent with the expectations for a country which has taken decisions almost exclusively motivated by and compatible with economic considerations and measures.

The problem of the dramatic exacerbation of inequality/inequities also in high-income countries following the emergence of the crisis, has been documented in so many national, regional, global reports not to need specific quotations. The few studies listed in Table 6 are the results of a selection meant simply to give an idea of the degree of consistency of the findings across the spectrum of the health systems; with the exception of Sweden (where the problem is rather restricted and specific), all countries document and recognize also in such sensitive areas like the mother–child health, the risk (and the practice) of further marginalization of the already fragile populations, through the variety of obstacles imposed to their right of accessibility to care.

Table 6 Inequalities/inequities in pediatric populations in high-income countries
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Overall, the substantial absence of well-conducted and representative studies focusing specifically on the documentation of how the inequalities and inequities impact the quality of care and the outcome of chronic diseases is somehow surprising.

The Scenario of Pediatric/Chronic Renal Diseases

The sequence of presentation of data is reversed in this section, to reflect the substantial epidemiological invisibility in low–middle-income countries of pediatric chronic conditions, and among them of the model condition of chronic kidney disease.

The reference framework is provided ( Table 7 ) by data published over the last few years in high-income countries, which is difficult to compare because of the quali-quantitative heterogeneity of the populations, as well of the study designs and instruments: from ad hoc registries, to databases with uncertain representativeness, to surveys, to larger–smaller cohorts. The main message is clear: populations which are already fragile because of their ethnic or socioeconomic conditions are also discriminated against in terms of their accessibility to chronic kidney disease treatment. It is interesting to note that the impact of such discrimination on the quali-quantitative outcomes (from burden of the disease to mortality) is not a direct explicit concern. Neither the issues of “avoidability” nor of targeted interventions receive consideration. The data in Table 7 documents well the role of kidney diseases as a model of the degree and the implications of the invisibility of chronic pediatric diseases in low–middle-income countries as it is exemplified by chronic kidney diseases. The information available is patchy, the designs of the studies and the quality of the data are hardly controlled, and the data on discrimination are roughly presented, but hardly explored with respect to avoidable causes.

Table 7 Reports on inequalities/inequities in pediatric chronic kidney disease (CKD)
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The mention of a prospective well-documented cohort in Nicaragua (detailed results and comments are in their publication phase) is meant mainly to reiterate that a chronic pediatric condition must be allowed to become visible with the specificity of the related unmet needs, risk conditions and outcomes in order to produce even minimally reliable data.

Discussion and Conclusions

It is widely accepted that the area of maternal and child health is the first, most critical, and most sensitive instrument in measuring the unmet needs and their changes, for better or for worse, of societies. The consistent findings of the review are summarized as follows:

  • (i) The economic indicators of inequalities are definitely important variables, but they fail to quantify-qualify adequately the gradients of health conditions existing across extremes. The socio cultural-educational context of the mother is a far more precise descriptive and prognostic marker.

  • (ii) The variation in country policies in terms of healthcare investments is another factor of primary importance, which could aid in determining whether and to what extent the impact of inequalities could be reasonably corrected in terms of equity. The increasingly wider use of this term in policy plans and in bioethical discourses is not matched, in practice, by substantial interventions.

  • (iii) The interplaying gaps between inequalities and inequities are very similar in their mechanisms and evaluations across the spectrum of low–high-income countries, beyond the obvious differences in terms of baseline levels of socioeconomic indicators and resources.

  • (iv) Chronic pediatric conditions have been shown to be exposed to the additional severe risk of epidemiological invisibility, causing them to remain in an orphan status with respect to their need for introduction into health care systems, despite, or because of, their related burden.

  • (v) The case of the chronic kidney diseases, which has been explored as a model condition, is by no means alone. The wide and orphan range of disabilities is certainly a further priority (20), but other chronic pediatric disorders, from cancer to rheumatic diseases, are now seen as essential components of health care, also in many deprived countries (21,22).

Substantial and original investment in pediatric research in low-income countries and in middle-income countries should not produce basic research as seen in in western countries, rather it should be used to plan and develop projects, conceived and implemented as advanced research programs of the transferability of care strategies. Breaking away from their role as “death events” or indicators of disease burdens, children with chronic conditions should become visible as real histories, which are systematically translated into pragmatic prospective “cohort studies”. The inclusion criteria for patients in clinical research projects must include, with the same level of importance, essential medical information as well as information regarding nonmedical variables, which are necessary to qualify the chronic histories of children in terms of inequality and inequity. Simple, well-planned translational research projects targeted to chronic childhood diseases should be a priority for pediatric teams, with the active presence of nonmedical actors as well as of the families of the children, in order to assure continuity of care.

Inequality/ies and inequity/ies should become part of the care programs as comorbid conditions, with a decisional weight similar to that generated by a genetic/biochemical test, which modifies a specific risk profile of a child within a diagnostically homogeneous group.

The need for this translational approach must be faced with a flexibility-creativity of methods to be adapted to the expected variability of the settings of life and care. Accordingly, pediatric research should contribute through field projects which tackle the real epidemiology of the communities where inequalities and in-equity are a permanent comorbid condition. The often underlined insufficient responsiveness and/or compliance to purely medical interventions needs to be reversed into projects where collaborative, targeted, nonoccasional interventions are planned, and implemented nonmedical actors and strategies are activated.

Scientific-professional societies play a critical role, by fostering this integrated approach to chronic diseases. A post-2015 agenda must include chronic pediatric conditions as a measure of a concrete commitment to the contribution to the promotion of equity. Maps of priorities in different regions and countries should stimulate and accelerate implementation strategies.

Collaborative, pediatrician-initiated, multicentre (national, regional, international) projects in this field should be given priority in calls for medium–long-term research grants supported by public agencies, in order to integrate and balance the impact of ongoing trends which favor private initiatives. Initiatives which, by definition, carry the unfortunately risk of maintaining nonequitable policies of care.

The Sustainable Development Goals agenda (whose definition is still in progress) should be considered an important opportunity to facilitate and expand the approach to pediatric chronic diseases, representing a difficult but progressively successful cultural investment devoted to disease-related conditions in the youngest age groups.

The involvement of a critical mass of those working in the “fringes” of pediatric care is a final, essential means by which significant results can be produced; this cannot be the sole responsibility and research interest of centers of excellence.

The “evidence” supporting a choice in this direction is there. At the end of the day, pediatric research should become a protagonist even in making such evidence accessible to our future generations, who are so easily and equally marginalized in real economic and political terms.

Statement of Financial Support

No financial assistance was received to support this study. No financial ties to declare.