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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.

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.

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.