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Prelims

Issues and Opportunities in Primary Health Care for Children in Europe

ISBN: 978-1-78973-354-9, eISBN: 978-1-78973-351-8

Publication date: 6 May 2019

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(2019), "Prelims", Blair, M., Rigby, M. and Alexander, D. (Ed.) Issues and Opportunities in Primary Health Care for Children in Europe, Emerald Publishing Limited, Leeds, pp. i-xx. https://doi.org/10.1108/978-1-78973-351-820191022

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Emerald Publishing Limited

Copyright © 2019 European Commission

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This chapter is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this chapter (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

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ISSUES AND OPPORTUNITIES IN PRIMARY HEALTH CARE FOR CHILDREN IN EUROPE

Title Page

ISSUES AND OPPORTUNITIES IN PRIMARY HEALTH CARE FOR CHILDREN IN EUROPE

The Final Summarised Results of the Models of Child Health Appraised (MOCHA) Project

EDITED BY

MITCH BLAIR, MICHAEL RIGBY, DENISE ALEXANDER

Imperial College London, UK

The project was funded by the European Commission through the Horizon 2020 Framework under the grant agreement number: 634201. The sole responsibility for the content of this work lies with the authors. It does not necessarily reflect the opinion of the European Union. The European Commission is not responsible for any use that may be made of the information contained therein

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Emerald Publishing Limited

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First edition 2019

Copyright © 2019 European Commission.

Except where otherwise noted, this work is licensed under a Creative Commons Attribution 4.0 Licence (CC BY 4.0).

Anyone may reproduce, distribute, translate and create derivative works of this book (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at https://creativecommons.org/licenses/by/4.0/

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A catalogue record for this book is available from the British Library

ISBN: 978-1-78973-354-9 (Print)

ISBN: 978-1-78973-351-8 (Online)

ISBN: 978-1-78973-353-2 (Epub)

List of Figures

Chapter 1
Figure 1.1. The Country Agent process. 9
Figure 1.2. Integration of MOCHA project activities over 42 months. 11
Chapter 2
Figure 2.1. The MOCHA working model. 40
Chapter 3
Figure 3.1. Respondents’ opinions on the age at which a child should be able to do the activities mentioned in the 10 Questions, presented as cumulative percentages of respondents of the five countries together. 63
Figure 3.2. Respondents’ opinions on the age at which a child should be able to do the activities, averaged for the 10 questions, presented as cumulative percentages of respondents for each of the five countries. 64
Figure 3.3. Percentage of agreement (summed percentage of respondents that agree and strongly agree) with the statements on autonomy-related attribute-items, indicated by the respondents of the five countries, based on their experiences. 67
Chapter 4
Figure 4.1. Child-centric health policy. 84
Figure 4.2. Child as the central actor in the process of shaping child health policy. 86
Chapter 6
Figure 6.1. Overview on consideration of children and adolescents in national e-health strategies in Europe. 126
Chapter 7
Figure 7.1. Overview of child health indicators available through the HBSC portal. 134
Figure 7.2. Overview of health indicators available through the Eurostat database. 136
Figure 7.3. Example of the four levels of hierarchy for causes of mortality. 138
Figure 7.4. Overview of indicators available through World Bank Open Data database. 140
Figure 7.5. Distribution (n) of measures available in international databases by disease – total number of countries providing data for at Least One measure related to the specific disease. 148
Figure 7.6. Distribution (n) of measures provided by CAs by disease. Total number of CAs reporting at least one measure related to the specific disease. 150
Chapter 8
Figure 8.1. Path diagram of the relationships across the research questions. 169
Figure 8.2. Path diagram of the hypothesised SEM model (structural and measurement models). 170
Figure 8.3. Schematic diagram for the measures classification. 174
Figure 8.4. Flow of the compilation of metadata catalogue and semantic models to harmonise case definitions and facilitate comparison from different data sources. 176
Chapter 10
Figure 10.1. Model of key themes influencing the care of children with enduring mental health needs at the primary care interface. 212
Figure 10.2. An Example of UML use of case diagram: provision of screening services for children with autism. 213
Chapter 12
Figure 12.1. Countries with extensive policy on AHS. 240
Chapter 13
Figure 13.1. Skills and qualifications required to adequately treat and monitor vulnerable children. 261
Figure 13.2. Nursing training requirements to look after children with CCN. 275
Figure 13.3. Distribution of Child-related Content across the Different Modules in the Curriculum. 276
Chapter 14
Figure 14.1. Use of EHRs in delivery of primary care for children. 285
Figure 14.2. Use of child public health EHRs in Europe. 286
Figure 14.3. Overview of countries with URIs to link children’s health records in the EU/EEA. 287
Figure 14.4. Overview on when the URI is issued. 288
Figure 14.5. Overview on national issuing process and URI function. 288
Figure 14.6. If there is not a linked record between primary care services and school health services, what type of information is it policy to pass from the SHS practitioner to the primary care practitioner? 295
Figure 14.7. Looking at communication in the other direction, from primary care to school health service professionals, what is the policy of information sharing from primary care to the school health service? 296
Figure 14.8. If a pupil sustains an injury in school that needs urgent medical treatment, is the school able to supply to the urgent treatment centre: the child’s tetanus immunisation status? 297
Figure 14.9. According to the policy for record keeping in your country, can a child request to have sight of their medical records? 297
Figure 14.10. Countries where a child can specify that their parents may not see part of their medical records. 298
Chapter 15
Figure 15.1. Training in the management and treatment of common illnesses in childhood. 307
Figure 15.2. Conceptual framework behind the assessment framework. 320
Figure 15.3. Integration between primary health care/social care stipulated in legal/policy framework. 321
Chapter 16
Figure 16.1. The PIET-T model with systematised criteria to determine transferability. 333
Chapter 18
Figure 18.1. Adapted PIET-T model with systematised criteria to determine transferability with ‘P’ concretised for children’s primary health care 361
Figure 18.2. Evidence usage in child health policy-making. 361
Figure 18.3. Types of most effective format of recommendations. 369

List of Tables

Chapter 2
Table 2.1. Mapping of models of provision in MOCHA countries. 17
Table 2.2. Dimensions of the conceptual general health frameworks. 32
Table 2.3. Dimensions of the primary health care conceptual frameworks. 35
Table 2.4. Structure of a model in terms of the MOCHA project. 42
Table 2.5. Primary care in a child centred ecological model and MOCHA. 45
Table 2.6. Life stage of a child and the MOCHA project (Broadly illustrated by school ages, which may have different parameters in different countries). 48
Chapter 3
Table 3.1. Overview of number of children and number and type of interviews in each country. 59
Table 3.2. Percentage of agreement (summed percentage of respondents that agree and strongly agree) with the statements on autonomy-related attribute items, indicated by the respondents of the five countries. 65
Chapter 4
Table 4.1. Timeline of increasing awareness and respect for the rights of a child in Europe. 81
Table 4.2. Rights of children to primary health care. 91
Chapter 5
Table 5.1. Levels of equality regarding entitlements to health care for three groups of migrant children compared to national children. (No data = no data were available) 111
Chapter 7
Table 7.1. Overview of child health indicators available on the WHO Health for All explorer. 133
Table 7.2. Overview of child health indicators on the Eurostat database. 137
Table 7.3. List of health indicators available through World Bank Open Data database. 141
Table 7.4. Distribution of measures by age ranges in international databases. 146
Table 7.5. Distribution of measures by age ranges according to Country Agent responses. 147
Table 7.6. National data on health expenditure and financing and for the MOCHA countries. 153
Chapter 8
Table 8.1. Measures identified by WP-leader related to coordination and assumed values. 162
Table 8.2. Measures identified by WP-leader related to coordination and attributed scores. 163
Table 8.3. Scores assumed in the coordination measures by the MOCHA countries. 164
Table 8.4. Kendall’s correlation matrix (*p < 0.05). 165
Table 8.5. Countries distribution by e-coordination strength. 165
Table 8.6. National expenditure on ‘Governance and health system administration’ by e-coordination strength (Euro Per Inhabitant, 2015). 166
Table 8.7. Current health care expenditure by e-coordination strength (Euro Per Inhabitant, 2015). 166
Table 8.8. Decomposition of the effects estimated by the hypothesised SEM model. 171
Chapter 9
Table 9.1. Financing and service delivery classifications. 183
Table 9.2. PHAMEU scoring system for the strength of the countries’ primary care system (Kringos et al., 2013). 185
Table 9.3. Description of dependent and independent variables used in the analysis. 187
Table 9.4. Summary descriptive statistics of quantitative variables included in the analysis for the 30 MOCHA countries, 2004–2016 (N = 390 is complete data for all countries and all years). 189
Table 9.5. Values of quantitative variables by country – last year for which data were available. 190
Table 9.6. Results of regression modelling. 192
Chapter 10
Table 10.1. Access to care for children with complex care needs. 203
Table 10.2. Co-creation of care for children with complex care needs. 206
Table 10.3. Effective integrated governance for children with complex care needs. 208
Chapter 11
Table 11.1. Essential indicators of access of SHS. 224
Table 11.2. Essential indicators of workforce in school health services. 229
Chapter 12
Table 12.1. Indicators of quality management for mental health services and sexual and reproductive health care for adolescents. 242
Chapter 13
Table 13.1. Healthcare expenditure and workforce data for the MOCHA countries. 249
Table 13.2. Density of paediatricians by MOCHA typology of primary care for children. 251
Table 13.3. Questions on workforce sent to Country Agents. 252
Table 13.4. Primary care (PC) workforce configuration, summary of Country Agent responses. 254
Table 13.5. Country Agent responses to questions on training of workforce for children in primary care. 256
Table 13.6. A whole population approach: patient segments in child health. 260
Table 13.7. Three representative countries. 262
Table 13.8. Characteristics of the European medical schools’ curricula analysed by MOCHA. 262
Table 13.9. Mandatory courses related to health care of subgroups of vulnerable children in Bulgaria, Germany and Iceland. 264
Table 13.10. Skills and qualifications to overcome challenges in adequate treatment of vulnerable children. 265
Table 13.11. A child health provider’s required qualifications. 266
Table 13.12. Training in adolescent health delivered within various disciplines and important topics in primary care, across all participating countries. 268
Chapter 14
Table 14.1. Functionality and data exchange of child public health systems. 286
Table 14.2. Overview on organisational linkages electronic record data sharing. 290
Table 14.3. Overview on types of electronic health data exchanged. 291
Table 14.4. What is the policy in your country for health professionals of the school health service (SHS) in keeping their own health records? 293
Table 14.5. MOCHA countries with website accreditation process in place. 299
Table 14.6. MOCHA countries with apps accreditation process reported. 299
Chapter 15
Table 15.1. Policy for provision of consulting rooms in pharmacies. 305
Table 15.2. Is there a policy that all children have access to a dentist free of charge? 310
Table 15.3. Access for children with a disability or with a specific clinical risk. 312
Table 15.4. Legal entitlement to social care for children with complex care needs in European countries. 317
Chapter 18
Table 18.1. Overview of the quality aspects with a high potential for improvement, presented for each of the five countries. 365
Chapter 19
Table 19.1. Total non-accidental deaths and Rate of Change in 20–24-year-olds (2006–2016) (GBD Study). 374

List of Contributors

Denise Alexander Imperial College London, UK
Manna Alma University Medical Center Groningen, Netherlands
Amina Al-Yassin Imperial College London, UK
Jay Berry Boston Children’s Hospital, USA
Mitch Blair Imperial College London, UK
Magda Boere-Boonekamp University of Twente, Netherlands
Maria Brenner Trinity College Dublin, Ireland
Anne Clancy University of Tromsø, Norway
Barbara Corso CNR Neuroscience Institute (IN), Padova, Italy
Shalmali Deshpande Imperial College London, UK
Filipa Ferreira University of Surrey, UK
Heather Gage University of Surrey, UK
Karin Groothuis-Oudshoorn University of Twente, Netherlands
Carol Hilliard Our Lady’s Children’s Hospital, Crumlin, Dublin
Eleanor Hollywood Trinity College Dublin, Ireland
Uy Hoang University of Surrey, UK
Danielle Jansen University Medical Center Groningen, Netherlands
Stine Lundstroem Kamionka University of Southern Denmark, Denmark
Nicole van Kesteren TNO (Netherlands Organisation for Applied Scientific Research), Netherlands
Paul Kocken TNO (Netherlands Organisation for Applied Scientific Research), Netherlands
Grit Kühne Imperial College London, UK
Uttara Kurup Imperial College London, UK
Philip Larkin Université de Lausanne, Switzerland, previously
Sapfo Lignou King’s College London, UK
Gaby de Lijster TNO (Netherlands Organisation for Applied Scientific Research), Netherlands
Harshana Liyanage University of Surrey, UK
Simon de Lusignan University of Surrey, UK
Daniela Luzi CNR Institute for Research on Population and Social Policies (IRPPS), Rome, Italy
Ekelechi MacPepple University of Surrey, UK
Michael Mahgerefteh Imperial College London, UK
Arjun Menon Imperial College London, UK
Pierre-André Michaud University Hospital of Lausanne, Switzerland
Nadia Minicuci CNR Neuroscience Institute (IN), Padova, Italy
Elena Montañana Olaso Trinity College Dublin, Ireland
Miriam O’Shea Trinity College Dublin, Ireland
Catharina Nitsche Imperial College London, UK
Colman Noctor Trinity College Dublin, Ireland
Fabrizio Pecoraro CNR Institute for Research on Population and Social Policies (IRPPS), Rome, Italy
Sijmen A. Reijneveld University Medical Center Groningen, Netherlands
Michael Rigby Imperial College London, UK
Ilaria Rocco CNR Neuroscience Institute (IN), Padova, Italy
Mariana Miranda Autran Sampaio Imperial College London, UK
Rose Satherley King’s College London, UK
Tamara Schloemer Maastricht University, Netherlands
Peter Schröder-Bäck Maastricht University, Netherlands
Oscar Tamburis CNR Institute for Research on Population and Social Policies (IRPPS), Rome, Italy
Keishia Taylor Trinity College Dublin, Ireland
Janine van Til University of Twente, Netherlands
Johanna P. M. Vervoort University Medical Center Groningen, Netherlands
Annemieke Visser University Medical Center Groningen, Netherlands
Eline Vlasblom TNO (Netherlands Organisation for Applied Scientific Research), Netherlands
Austin Warters Trinity College Dublin, Ireland
Helen Wells Keele University, UK
Ingrid Wolfe King’s College London, UK
Kinga Zdunek Medical University of Lublin, Poland
Renate van Zoonen TNO (Netherlands Organisation for Applied Scientific Research), Netherlands

Foreword

When I reflect back on the last 35 years of clinical practice as a paediatrician, I am very aware of the considerable changes to children’s health which have occurred in my country and in Europe. Many diseases I saw as a student and young trainee have all but disappeared through the development and administration of new vaccines or the introduction of novel technological discoveries such as artificial surfactant, home ventilation and new drugs for cancer treatment. These have resulted in improved survival of so many children and young people who would have otherwise suffered premature death from the myriad of different congenital or acquired conditions. At the same time, I am all too cognisant of the effects of the degree of social change both in terms of the changing nature of family structure and stability, of unacceptable levels of poverty and inequity, environmental challenges such as nutrition, housing and pollution, the effects of national and international conflict leading to unprecedented movement of families between continents and of the huge changes in the speed and breadth of communication and social media. In parallel, there are increased levels of mental health disorder, obesity, neurodevelopmental issues such as specific learning difficulties, ADHD and autism and the sheer complexity of multimorbidity of twenty-first-century children and young people.

How do we ensure that we keep up to date and that clinical care remains relevant and effective in such circumstances? Clearly, clinical practice not only depends on the capacity and competence of well-trained practitioners but also depends on the context of a country or region’s health care system and this, in turn, has its own historical, cultural, political and economic origins. And in any country, primary care is the first port of call, where the great majority of prevention, diagnosis and treatment are carried out.

It is the attention to both the clinical and the wider aspects of primary child health care which was the focus and purpose of the Models of Child Health Appraised (MOCHA) project, funded by the European Union’s Horizon 2020 programme from 2015 to 2018. MOCHA set out to describe the organisation of primary care for children and young people in all 28 EU and two EEA countries in Europe. We originally set out to answer which systems work best and how might we use such knowledge to improve the delivery of primary care for this population; it also allowed us a unique view of the current situation in Europe and how we might shape the next era. As a multidisciplinary international research team of over 80 individuals, we wanted to explore this from multiple perspectives and this is reflected in the fact that we drew expertise from many different professional and scientific disciplines: paediatrics, school and adolescent specialists, public health and family practice, nursing, social science and care, political science, economics, health management, informatics, epidemiology, statistics and even criminology.

Michael, Denise and I have worked with each other for at least two decades on a number of European projects and for MOCHA – this itself is a story, to be told elsewhere, of the slow evolution of European child public health projects. In MOCHA, we were most ably supported by our project manager, Christine Chow. My respect for and gratitude to them all is immeasurable. This core team, along with the committed group of co-worker scientists slowly growing in number and influence over this period, very much bonded as a ‘family’ over the last four years, and together we have been on a fascinating voyage of discovery, challenge and mutual learning. In another aspect of development, eight babies were born to members of the MOCHA family over that time!

It has been an extraordinarily rich experience for me personally and I am sure this is the same for many of those involved. We have had many challenges. It was frustrating and disappointing that we were unable to find robust and readily available routine data to inform so many of our appraisal processes, an important discovery in itself. However, we gained enormously from the insights of children in a number of countries who told us what they thought about the services offered, and especially and uniquely, from the detailed answers from the country agents in each country and from the extensive literature and other reviews carried out by the MOCHA scientists. This book is the culmination of that joint learning which I know will help us all to take the next steps in further improving the outcomes for millions of children and young people in Europe.

Professor Mitch Blair – Principle Investigator, MOCHA.

Imperial College, London, UK

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