Issues and Opportunities in Primary Health Care for Children in Europe

Primary care (PC) is a strong determinant of overall health care. Children make up around a fifth of the population of the European Union and European Economic Area and have their own needs and uptake of PC. However, there is little research into how well PC services address their needs. There are large differences in childhood mortality and morbidity patterns in the EU and EEA countries, and there has been a major epidemiological shift in the past half century from predominantly communicable disease, to non-communicable diseases presenting and increasingly managed in PC. This increase in multifactorial morbidities, such as obesity and learning disability, has led to the need for PC systems to adapt to accommodate these changes. Europe presents a challenging picture of unexplained variation in health care delivery and style and of children’s different health experiences and health-related behaviour. The Models of Child Health Appraised (MOCHA) project aimed to describe the PC systems in detail, analyse their components and appraise them from a number of different viewpoints, including professional, public, political and economic lenses. It did this through nine work packages supported by a core management team, and a network of national agents, individuals in each MOCHA country who had the expertise in research and knowledge of their national health care system to answer a wide range of questions posed by the MOCHA scientific teams.

The Models of Child Health Appraised (MOCHA) project identified the different models of primary care that exist for children, examined the particular attributes that might be different from those directed at adults and considered how these models might be appraised. The project took the multiple and interrelated dimensions of primary care and simplified them into a conceptual framework for appraisal. A general description of the models in existence in all 30 countries of the EU and EEA countries, focusing on lead practitioner, financial and regulatory and service provision classifications, was created. We then used the WHO ‘building blocks’ for high-performing health systems as a starting point for identifying a good system for children. The building blocks encompass safe and good quality services from an educated and empowered workforce, providing good data systems, access to all necessary medical products, prevention and treatments, and a service that is adequately financed and well led. An extensive search of the literature failed to identify a suitable appraisal framework for MOCHA, because none of the frameworks focused on child primary care in its own right. This led the research team to devise an alternative conceptualisation, at the heart of which is the core theme of child centricity and ecology, and the need to focus on delivery to the child through the life course. The MOCHA model also focuses on the primary care team and the societal and environmental context of the primary care system.

Children’s voices are seldom heard directly. Most often, children, particularly young children, are represented by adults acting on their behalf who may or may not best represent the child’s views or best interests. This can be beneficial or problematic, if the child’s needs are not appreciated or recognised. This chapter looks at the changing attitudes to listening to young people, and the growing recognition of the value of children’s needs, as well as the growing voices of the children themselves, who make their needs increasingly clear. The results of our Models of Child Health Appraised (MOCHA) interviews with children and young people via the DIPEx International organisation give us clear direction as to the importance children using primary care services place on being taken seriously, being listened to and being able to make their own decisions. Other researchers asked input from primary care professionals on children’s autonomy and how the current and future primary care systems can best address the needs of young people, as well as the placing of these issues in a wider cultural context, and how this influences and is influenced by children’s choices. Finally, we look at how the MOCHA country agents have reported the assessment of the importance and function of listening to young people in our research.

The child is at the centre of all Models of Child Health Appraised research and indeed all primary care delivery for children. Appraising models of primary care for children is incomplete without ensuring that experiences of primary care, design, treatment, management and outcomes are optimal for the child. However, the principle of child centricity is not implicit in many healthcare systems and in many aspects of life, yet it is extremely important for optimal child health service design and child health. By exploring the changing concept of ‘childhood’, we understand better the emergence of the current attitude towards children and their role in today’s Europe and the evolution of child rights. Understanding child centricity, and the role of agents acting on behalf of the child, allows us to identify features of children’s primary care systems that uphold the rights of a child to optimum health. This is placed against the legal commitments made by the countries of the European Union and European Economic Area to ensure that children’s rights are respected.

Equity is an issue that pervades all aspects of primary care provision for children and as such is a recurring theme in the Models of Child Health Appraised project. All European Union member states agree to address inequalities in health outcomes and include policies to address the gradient of health across society and target particularly vulnerable population groups. The project sought to understand the contribution of primary care services to reducing inequity in health outcomes for children. We focused on some key features of inequity as they affect children, such as the importance of good health services in early childhood, and the effects of inequity on children, such as the higher health needs of underprivileged groups, but their generally lower access to health services. This indicates that health services have an important role in buffering the effects of social determinants of health by providing effective treatment that can improve the health and quality of life for children with chronic disorders. We identified common risk factors for inequity, such as gender, family situation, socio-economic status (SES), migrant or minority status and regional differences in healthcare provision, and attempted to measure inequity of service provision. We did this by analysing routine data of universal primary care procedures, such as vaccination, age at diagnosis of autism or emergency hospital admission for conditions that can be generally treated in primary care, against variables of inequity, such as indicators of SES, migrant/ethnicity or urban/rural residency. In addition, we focused on the experiences of child population groups particularly at risk of inequity of primary care provision: migrant children and children in the state care system.

Whilst nations have overall responsibility for policies to protect and serve their populations, in many countries, health policy and policies for children are delegated to regions or other local administrations, which make it a challenging subject to explore at a national level. We sought to establish which countries had specific strategies for child and adolescent health care, and whether primary care, social care and the school–healthcare interface was described and planned for, within any policies that exist. In addition, we established the extent to which a child health strategy and meaningful reference to children’s records and care delivery exist in an e-health context. Of concern in the Models of Child Health Appraised (MOCHA) context is that 40% of European Union and European Economic Area countries had reported no health strategy for children, and more than a half had no reference to supporting delivery of children’s health in their e-health strategy.

We investigated the differences in ownership and leadership of children’s policy, which was a range of ministry input (health, education, labour, welfare or ministries of youth and family); as well as cross-ministerial involvement. In terms of national policy planning and provider planning, we investigated the level of discussion, consultation and interaction between national healthcare bodies (including insurance bodies), providers and the public in policy implementation. The MOCHA project scrutinised the way countries aim to harness the latest technologies by means of e-health strategies, to support health services for children, and found that some had no explicit plans whereas a few were implementing significant innovation. Given that children are a key sector of the population, who by very nature have a need to rely on government and formally governed services for their well-being in the years when they cannot themselves seek or advocate for services, our findings are particularly worrying.

In order to assess the state of health of Europe’s children, or to appraise the systems and models of healthcare delivery, data about children are essential, with as much precision and accuracy as possible by small group characteristic. Unfortunately, the experience of the Models of Child Health Appraised (MOCHA) project and its scientists shows that this ideal is seldom met, and thus the accuracy of appraisal or planning work is compromised. In the project, we explored the data collected on children by a number of databases used in Europe and globally, to find that although the four quinquennial age bands are common, it is impossible to represent children aged 0–17 years as a legally defined group in statistical analysis. Adolescents, in particular, are the most invisible age group despite this being a time of life when they are rapidly changing and facing increasing challenges. In terms of measurement and monitoring, there is little progress from work of nearly two decades ago that recommended an information system, and no focus on the creation of a policy and ethical framework to allow collaborative analysis of the rich anonymised databases that hold real-world people-based data. In respect of data systems and surveillance, nearly all systems in European society pay lip service to the importance of children, but do not accommodate them in a practical and statistical sense.

Evaluating primary care for children has not before been undertaken on a national level, and only infrequently on an international level, an adult-focused perspective is the norm. The Models of Child Health Appraised (MOCHA) project explored the evaluation of quality of primary care for children in a nationally comparable way, which recognises the influence of all components of child well-being and well-becoming. Using adult-focused metrics fails to account for children’s physical and psycho-social development at different ages, differences in health and non-health determinants, patterns of disease and risk factors and the stages of the life course. To do this, we attempted to identify comparable measures of child health in the European Union and European Economic Area countries, we aimed to perform a structural equation modelling technique to identify causal effects of certain policies or procedures in children’s primary care and we aimed to identify and interrogate large datasets for key tracer conditions. We found that the creation of comparative data for children and child health services remains a low priority in Europe, and the largely unmet need for indicators covering all the healthcare dimensions hampers development of evidence-based policy. In terms of the MOCHA project objective of appraising models of child primary health care, the results of this specific work show that the means of appraisal of system and service quality are not yet agreed or mature, as well as having inadequate data to fuel them.

The 30 MOCHA (Models of Child Health Appraised) countries are diverse socially, culturally and economically, and differences exist in their healthcare systems and in the scope and role of primary care. An economic analysis was undertaken that sought to explain differences in child health outcomes between countries. The conceptual framework was that of a production function for health, whereby health outputs (or outcomes) are assumed affected by several ‘inputs’. In the case of health, inputs include personal (genes, health behaviours) and socio-economic (income, living standards) factors and the structure, organisation and workforce of the healthcare system. Random effects regression modelling was used, based on countries as the unit of analysis, with data from 2004 to 2016 from international sources and published categorisations of healthcare system. The chapter describes the data deficiencies and measurement conundrums faced, and how these were addressed. In the absence of consistent indicators of child health outcomes across countries, five mortality measures were used: neonatal, infant, under five years, diabetes (0–19 years) and epilepsy (0–19 years). Factors found associated with reductions in mortality were as follows: gross domestic product per capita growth (neonatal, infant, under five years), higher density of paediatricians (neonatal, infant, under five years), less out-of-pocket expenditure (neonatal, diabetes 0–19), state-based service provision (epilepsy 0–19) and lower proportions of children in the population, a proxy for family size (all outcomes). Findings should be interpreted with caution due to the ecological nature of the analysis and the limitations presented by the data and measures employed.

Improvements in neonatal and paediatric care mean that many children with complex care needs (CCNs) now survive into adulthood. This cohort of children places great challenges on health and social care delivery in the community: they require dynamic and responsive health and social care over a long period of time; they require organisational and delivery coordination functions; and health issues such as minor illnesses, normally presented to primary care, must be addressed in the context of the complex health issues. Their clinical presentation may challenge local care management. The project explored the interface between primary care and specialised health services and found that it is not easily navigated by children with CCNs and their families across the European Union and the European Economic Area countries. We described the referral-discharge interface, the management of a child with CCNs at the acute–community interface, social care, nursing preparedness for practice and the experiences of the child and family in all Models of Child Health Appraised countries. We investigated data integration and the presence of validated standards of care, including governance and co-creation of care. A separate enquiry was conducted into how care is accessed for children with enduring mental health disorders. This included the level of parental involvement and the presence of multidisciplinary teams in their care. For all children with CCNs, we found wide variation in access to, and governance of, care. Effective communication between the child, family and health services remains challenging, often with fragmentation of care delivery across the health and social care sector and limited service availability.

Models of Child Health Appraised (MOCHA) defines school health services (SHSs) as those that exist due to a formal arrangement between educational institutions and primary health care. SHSs are unique in that they are designed exclusively to address the needs of children and adolescents in this age group and setting.

We investigated SHSs have been provided to schools and how they contribute to primary healthcare services for school children. We did this by mapping the national school health systems against the standards of the World Health Organization, and against a framework measuring the strength of primary care, adapting this from an existing, adult-focused framework.

We found that all but two countries in the European Union and European Economic Area have SHSs. There, however, remains a need for much greater investment in the professional workforce to run the services, including training to ensure appropriateness and acceptability to young people. Greater collaboration between SHSs and primary care services would lead to better coordination and the potential for better health (and educational) outcomes. Involving young people and families in the design of SHSs and as participants in its outputs would also improve school health.

Adolescence is a time when a young person develops his or her identity, acquires greater autonomy and independence, experiments and takes risks and grows mentally and physically. To successfully navigate these changes, an accessible and health system when needed is essential.

We assessed the structure and content of national primary care services against these standards in the field of adolescent health services. The main criteria identified by adolescents as important for primary care are as follows: accessibility, staff attitude, communication in all its forms, staff competency and skills, confidential and continuous care, age appropriate environment, involvement in health care, equity and respect and a strong link with the community.

We found that although half of the Models of Child Health Appraised countries have adopted adolescent-specific policies or guidelines, many countries do not meet the current standards of quality health care for adolescents. For example, the ability to provide emergency mental health care or respond to life-threatening behaviour is limited. Many countries provide good access to contraception, but specialised care for a pregnant adolescent may be hard to find.

Access needs to be improved for vulnerable adolescents; greater advocacy should be given to adolescent health and the promotion of good health habits. Adolescent health services should be well publicised, and adolescents need to feel empowered to access them.

Given that the workforce constitutes a principal resource of primary care, appraisal of models of care requires thorough investigation of the health workforce in all Models of Child Health Appraised (MOCHA) countries. This chapter explores this in terms of workforce composition, remuneration, qualifications and training in relation to the needs of children and young people. We have focused on two principal disciplines of primary care; medicine and nursing, with a specific focus on training and skills to care for children in primary care, particularly those with complex care needs, adolescents and vulnerable groups. We found significant disparities in workforce provision and remuneration, in training curricula and in resultant skills of physicians and nurses in European Union and European Economic Area Countries. A lack of overarching standards and recognition of some of the specific needs of children reflected in training of physicians and nurses may lead to suboptimal care for children. There are, of course, many other professions that also contribute to primary care services for children, some of which are discussed in Chapter 15, but we have not had resources to study these to the same detail.

Information and communication technologies can transform how services can be and are delivered as has already happened in other arenas, such as civil aviation, financial services and retailing. Most modern health care is heavily dependent on e-health, including record keeping, targeted information sharing and digital diagnostic and imaging techniques. However, there remains little scientific knowledge base for optimal system content and function in primary health care, particularly for children. Models of Child Health Appraised (MOCHA) aimed to establish the current e-health situation in children’s primary care services. Electronic health records (EHRs) are in regular use in much of northern and western Europe and in some newer European Union Member States, but other countries lag behind. MOCHA investigated the use of unique identifiers, the use of case-based public health EHRs and the capability of record linkage, linkage of information with school health data and monitoring of social media influences, such as health websites and health apps. A widespread lack of standards underlined a lack of research enquiry into this issue in terms of children’s health data and health knowledge. Health websites and apps are a growing area of healthcare delivery, but there is a worrying lack of safeguards in place. The challenge for policy-makers and practitioners is to be aware and to lead on the innovative harnessing of new technologies, while protecting child users against new harms.

There is more to primary care than solely medical and nursing services. Models of Child Health Appraised (MOCHA) explored the role of the professions of pharmacy, dental health and social care as examples of affiliate contributors to primary care in providing health advice and treatment to children and young people. Pharmacies are much used, but their value as a resource for children seems to be insufficiently recognised in most European Union (EU) and European Economic Area (EEA) countries. Advice from a pharmacist is invaluable, particularly because many medicines for children are only available off-label, or not available in the correct dose, access to a pharmacist for simple queries around certain health issues is often easier and quicker than access to a primary care physician or nursing service. Preventive dentistry is available throughout the EU and EEA, but there are few targeted incentives to ensure all children receive the service, and accessibility to dental treatment is variable, particularly for disabled children or those with specific health needs. Social care services are an essential part of health care for many extremely vulnerable children, for example those with complex care needs. Mapping social care services and the interaction with health services is challenging due to their fragmented provision and the variability of access across the EU and EEA. A lack of coherent structure of the health and social care interface requires parents or other family members to navigate complex systems with little assistance. The needs of pharmacy, dentistry and social care are varied and interwoven with needs from each other and from the healthcare system. Yet, because this inter-connectivity is not sufficiently recognised in the EU and EEA countries, there is a need for improvement of coordination and with the need for these services to focus more fully on children and young people.

There is considerable heterogeneity between primary care systems that have evolved in individual national cultural environments. Models of Child Health Appraised (MOCHA) studied how the transfer of models or their individual components can be achieved across nations, using examples of combinations of settings, functions, target groups and tracer conditions. There are many factors that determine the feasibility of successful transfer of these from one setting to another, which must be recognised and taken into account. These include the environment of the care system, national policy-making and contextual means of directing population behaviour – in the form of penalties and incentives, which cannot be assessed or expected to work by means of rational actions alone. MOCHA developed a list of criteria to assess transferability, summarised in a population characteristics, intervention content, environment and transfer (PIET-T) process. To explore the process and means of transferability, we obtained consensus statements from the researchers on optimum model scenarios and conducted a survey of stakeholders, professionals and users of children’s primary care services that involved three specific health topics: vaccination coverage in infants, monitoring of a chronic or complex condition and early recognition of mental health problems. The results give insight into features of transferability – such as the availability and the use of guidelines and formal procedures; the barriers and facilitators of implementation and similarities and differences between model practices and the existing model of child primary care in the country. We found that successful transfer of an optimal model is impossible without tailoring the model to a specific country setting. It is vital to be aware of the sensitivity of the population and environmental characteristics of a country before starting to change the system of primary care.

The Models of Child Health Appraised (MOCHA) project recognises that child health policy is determined to a great extent by national culture; thus, exploring and understanding the cultural influences on national policies are essential to fully appraise the models of primary care. Cultures are created by the population who adopt national rituals, beliefs and code systems and are unique to each country. To understand the effects of culture on public policy, and the resulting primary care services, we explored the socio-cultural background of four components of policy-making: content, actors, contexts and processes. Responses from the MOCHA Country Agents about recent key national concerns and debates about child health and policy were analysed to identify the key factors as determinants of policy. These included awareness, contextual change, freedom, history, lifestyle, religion, societal activation and tolerance. To understand the influence of these factors on policy, we identified important internal and external structural determinants, which we grouped into those identified within the structure of health care policy (internal), and those which are only indirectly correlated with the policy environment (external). An important child-focused cultural determinant of policy is the national attitude to child abuse. We focused on the role of primary care in preventing and identifying abuse of children and young people, and treating its consequences, which can last a lifetime.

Identifying the qualities of primary care that have the potential to produce optimal health outcomes is only half the story. The Models of Child Health Appraised (MOCHA) project has not only explored how to transfer these to other national contexts, but also which successful components should be transferred. It is important to assess the population criteria of the identified sociodemographic, cultural and social characteristics and the population perspectives on a care system’s components. The project analysed public experiences and perceptions of the quality of primary care for children from a representative sample of the general public in five European Union member states. The public perception of children’s primary care services, in particular the perceived quality of care and expectations with regard to care for children, is important to understand before MOCHA lessons can be effectively adopted in a country. We found that the socio-cultural characteristics of a country inform the population perceptions and preferences with regard to the care system. In the five countries surveyed, there was agreement about aspects of quality of care – such as accessible opening hours, confidential consultations for children and timeliness of consultation for an illness, but there was a difference in opinion about giving priority to items such as making an appointment without a referral, or a child’s right to a confidential consultation. The cultural context of transferability and the means of addressing this such as defining the target audience and the different means of disseminating important messages to the wider community to address contextual factors can act as barriers or facilitators to the introduction of new components of primary care models.

Models of Child Health Appraised (MOCHA) was a wide-ranging, multi-disciplinary and multi-method study that aimed to identify the best models of provision of primary care for the children of the European Union. The research has identified two main conclusions: (1) The depth of interdependency of health, economy and society. Primary care needs to be an active partner in public debate about current child health concerns. It should orientate more effectively in addressing wider societal influences on child health through advocacy and collaborative intersectoral public health approaches with those agencies responsible for public and community health if it is to address effectively issues such as childhood obesity, mental health and vaccine hesitancy. As part of this, it needs to address its workforce composition and skills, not least in two-way communication. (2) The European Community has many visions and commitments to children and child health policies, but their effectiveness is largely unfulfilled. The Commission can strengthen its impact on children’s health and healthcare services within current remits and resources by focusing on a number of key fields: planned and structured research, providing insight into optimal human resources and skills in child primary care, developing and using ethical means of listening to children’s views, remedying the invisibility of children in data, measuring the quality of primary care from a child-centric perspective, understanding the economics of investing in children’s health, developing e-health standards and evaluation, collaborative and harmonised use of downloaded research databases, understanding and respecting children’s rights and equity, and appreciating and allowing for children’s evolving autonomy as they grow up. An optimal model of primary care for children is proactive, inclusive, corporately linked, based on and providing robust evidence, and respects the wider determinants of health and children’s involvement in their health trajectory.