Research inventory of child health: A report on roadmaps for the future of child health research in Europe

RICHE was the response to a call under HEALTH-2009-3.3-5, with the title of 'European child health research platform'. The call text asked us to “address the diversity and fragmentation in child health research in Europe in an inclusive multidisciplinary way, identifying existing research programmes in Member States, recent advances and identification of gaps to explore road maps for the future of child health research in Europe”. Project structure A consortium, with a final total of 23 partners, and two associate (i.e. unfunded) partners, responded to this call. We designed a project with a linear structure, where the main focus of activity moved from work on the Inventory, and Indicators and Measurement, in Year 1, to work on Gaps in Year 2, finishing with the preparation of the Roadmap in year 3. The final 6 months (Year 4) were largely dissemination. The Platform, which is instantiated in our website, supported all of the other parts,, and was a focus for communication and dissemination throughout the project. Each workpackage focused on a specific area of work, but each fed into its successors, and all leaders and partners worked closely together. Each group produced a number of technical reports and other outputs. The final output was a Roadmap for future investment in European child health research. This has been widely disseminated, and has fed at Commission level and National level into the Horizon 2020 call preparation process. RICHE Roadmap The RICHE Roadmap is based upon a sound, scientific evidence base, which we had gathered as part of our earlier work. The project prepared an inventory of child health research and of measurements and indicators of child health in Europe (WP1 and WP2) . This was collated using a web platform – which can be found at www.childhealthresearch.eu. In addition to this exercise, a formal study of the gaps in child health research was undertaken by carrying out surveys and interviews of researchers and research users across Europe (WP3). This allowed our initial views on the research gaps to be refined and corrected by an iterative process, involving, both project partners, and the wider scientific community, so seeking grounding and validation for this key phase. These results formed the basis for the RICHE Roadmap. The Roadmap is based on a life-course perspective. It covers the important phases of a child’s development, including maternal health, and pregnancy, through to adolescence and the protective and risk factors, and health services encountered throughout childhood and adolescence as he or she moves towards adulthood. RICHE looked upstream to identify where more work needed to be done to prevent avoidable physical and mental ill-health, disability and death in the population of European children aged 0-18 years. This shows how the many influences and outcomes of children’s health are interrelated; a pattern reflected in the Roadmap. The work necessarily involved a series of value judgements, especially on setting priorities, because there are no objective and unconditionally valid answers to the question “Is there enough research on this topic?”, nor to the question “Is this a topic of significance?”. Nevertheless, the RICHE Roadmap uses an inclusive and transparent process to explain the recommendations it made, and the subjects it chose, making our values, and the reasons for judgements as explicit as possible. The report is organised into broad subject areas, that reflect the key ‘gaps’ in knowledge about children and young people, or about particular aspects of their lifestyle and health. These key areas, and selected findings within each area, are briefly summarised here. Life Course and Lifestyle This section focuses on children as they age, and recognises the importance of continuing to research how factors before conception, during gestation and in the very early years of life can affect present and future health. The challenges that children face as they grow up are also highlighted – these can be created because of policy decisions that fail to take account of children and young people’s lives or because of the pervasive influences of individual circumstances that act ask protective or risk factors for children’s actions. The concept of resilience in childhood is also highlighted, and how research needs to focus on this important and powerful means of improving children’s lives. A key issue, throughout the life course, is mental health and well-being. Fostering well-being in children from birth, and throughout childhood will provide numerous individual and societal benefits. It deserves a greater research focus. Socio-economic and Cultural Factors The socio-economic and cultural environment in which a child is born and grows up has a potent effect on a child’s health and well-being. Inequity and inequalities in health, between and within nations depending on socio-economic circumstances, are known to affect health outcomes. Those in the poorest areas have worse health, and shorter lives than those in the wealthiest areas. Other groups are at risk of marginalisation from health services and from opportunities that can maximise their health. These include migrant children where the question is how best to support their integration into their new societies and communities, while retaining their individual identity; children in the state care system have poor health and social outcomes, so improving these, by focused research is important for the future health of these children; children from minority population groups, in particular those who travel across nations, such as the Roma, need to have focused attention, to ensure that their health outcomes begin to match those of the general European child population. Social and Community Networks The main influences on children and young people are their immediate family and community networks. This extends from the influence of the family as a warm and nurturing environment in which to grow up – and conversely a place of the most profound danger and threat if such a family environment is toxic; to the wider influence of school, and finally the broader community. Becoming engaged and involved in community life is beneficial for the entire population, not just for the children and young people directly involved. It is an aspect of children and young people’s experience that is important for well-being and social inclusion. Environment The term 'environment' covers several different concepts, and the RICHE Roadmap describes the physical, virtual and also the perceived environment – all of which interlink in children’s lives, and have a profound effect on their health and development. These include the physical environment, the virtual (digital) environment, physical safety, including injury prevention, and protection form crime, anti-social behaviour and violence (both as perpetrators and victims). Complex Health Issues The majority of children in Europe are healthy, and ill-health is not a characteristic of this population as it is in, for example, an ageing population. However, there are certain health issues that affect children, and as such can blight an entire lifetime. Our Roadmap does not cover clinical issues, but takes a population perspective. There are certain disorders that have a population-wide effect and are prevalent enough in the child population to warrant particular attention from a public health viewpoint. Four specific areas of concern were identified – overweight and obesity, mental health, sexual and reproductive health, and neuro-developmental disorders. Health Services The main research needs of the health services focuses on the prevention of poor health. Comparing health services across Europe and evaluating the means of conveying health promotion messages are important directions for health research to investigate. Indicators need developing which reflect the effect of preventive actions, particularly among younger children. Vulnerable populations, such as those in deprived communities, need to have health prevention services particularly targeted. There is little systematic evaluation of such interventions, which compromises the development of new interventions and their implementation. Those who do not access services and those who need particular attention can be identified. Public Health Infrastructure Health surveillance is essential so that health needs can be identified and addressed effectively for the benefit of the child population. Yet, many existing sources of data are neither analysed, nor made available in a child-centric way. Children need to be made more visible in the data so that they can have more effective health promotion and health care on a population level. Specific examples include work on autism and morbidity due to injury. Europe also needs to establish proper measures and indicators of children’s health and children’s lives. We cannot act properly without first identifying and measuring the problem. Electronic health records are an emerging technology that has great potential, both for research, and for improved access to care. They need to be developed and investigated further to encourage their use across the European Union. Improving Research Capacity It is necessary to ensure that there are enough resources, both to do research, and to make use of the research findings. To sustain research activity, specialist training for junior child health researchers is needed, as are sufficient resources to maintain a critical mass of researchers and provide attractive career paths for them. Children and young people as subjects of research need to continue to be safeguarded by a consistently ethical framework, and information collected about children needs to be accurate, comprehensive and used intelligently so that interventions and services can be correctly directed. Using the roadmap The roadmap is a complex document, addressed to a number of different stakeholders. One key group are those who make decision bout research finding priorities. We have disseminated the roadmap widely at EU level, to reach into the process of priority setting for Horizon 2020. This has been done thought National Contact Points in each partner country, through relevant NGO's, and by sending copes to and meeting with relevant parts of the European Commission. Readers using the roadmap will most likely use it in two ways, first to make a general case for investment in Child Health Research, and secondly to target that investment, by considering the questions we have identified, and reviewing our justifications for these choices. We do not expect our work to determine future investments in child health, but we are confident that using our work would lead to better decisions overall. Conclusions Our core value is to put children first in our work. We take the rights of the child seriously, and we are conscious that many children do not have the opportunity to exercise the right to health and healthcare that European children they ought to have. The topics in this Roadmap are pragmatic in that they are researchable (within the grasp of presently available research methods and resources) and that are likely to have a significant effect on the lives of European children. This will go a considerable distance in improving the health and well-being of European children who may not have benefited from Europe’s good fortune up until this point. At the very least, the RICHE Roadmap aims to begin a serious conversation across Europe about the need for research to focus on children and how this will ultimately benefit all members of the European population. There is a need for children to become substantially more visible in European society. At present many children’s lives are invisible to health surveillance and to research. Sometimes they are submerged with their families, as in the case of Roma or for children of illegal and undocumented immigrant families. Even in well-documented societies, children’s circumstances are invisible as data are collected from the perspective of economically active adults, or households. Therefore, an overarching recommendation in this road map is the establishment of a European Child Health Observatory with a simple remit to make European Children, and their lives, health and attainment of rights more visible. We also recommend continuing and extending the discussion to the edge of existing child health boundaries, to address topics such as the effects on children’s health of urban design and architecture, fiscal policy (which can affect many health issues), welfare, or health effects of immigration policy. The RICHE Roadmap hopes to point the way in which children can be fully recognised and respected as forming a valuable population and whose health and well-being contributes to the health of our present and future European society

Understanding the impact of brain disorders: Towards a 'horizontal epidemiology' of psychosocial difficulties and their determinants

Objective To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study Design A multi-method study involving systematic literature reviews, content analysis of patientreported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional Objective To test the hypothesis of ‘horizontal epidemiology’, i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders. Study Design A multi-method study involving systematic literature reviews, content analysis of patientreported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson’s disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectionalThe PARADISE project is supported by the Coordination Theme 1 (Health) of the European Community’s FP7, Grant Agreement No. HEALTHF2- 2009-241572

The selection of items for the preliminary version of the COURAGE in Europe built environment instrument.

The built environment can increase or decrease disability through its impact on mobility or accessibility to infrastructures, and through its relation to social environment. There is a need for the development of a tool which allows to assess built environment in both objective and self-reported manner, contemplating also issues of accessibility and disability, and that allows data comparability across countries and populations. The present paper describes the preliminary process of the development of a new built environment instrument. It describes the process of the selection, creation and categorisation of a pool of items from the 31 instruments resulting from the UDHP Project. A pool of items was created and was used to produce two lists: the outdoor checklist, and the self-reported questionnaire. These two lists formed the basis of the COURAGE in Europe built environment instrument. The outcome of this selection and categorisation process was the creation of two lists of items, that are meant to measure the interaction between the built environment and aspects of health and disability in ageing

Linking COURAGE in Europe Built Environment instrument to the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

Objectives The aim of the paper is to prove that the COURAGE in Europe Built Environment (CBE) instrument selected items are relevant to health and disability assessment and evaluation. Study design The two lists of the CBE preliminary items – outdoor checklist and self-reported questionnaire – were linked to the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) through established linking rules. Results The pool of the CBE 162 preliminary items were linked to a total of 184 categories of ICF-CY, and belonged mainly to two out of the four of the ICF-CY components. Fifteen of the items were not linked to any category of the ICF-CY classification at all. The linking process showed that more than 90% of CBE preliminary items were linked to ICF-CY categories and more than 4/5 of them were linked to the ICF-CY component of environmental factors. Conclusion The fact that most of the linked CBE preliminary items referred to few ICF categories, on one hand showed that the ICF framework encompasses a lot of different aspects related to functioning and disability; on the other hand ICF categories are not very detailed for a comprehensive description of the built environment features

Linking COURAGE in Europe Built Environment instrument to the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

OBJECTIVES: The aim of the paper is to prove that the COURAGE in Europe Built Environment (CBE) instrument selected items are relevant to health and disability assessment and evaluation. STUDY DESIGN: The two lists of the CBE preliminary items--outdoor checklist and self-reported questionnaire--were linked to the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) through established linking rules. RESULTS: The pool of the CBE 162 preliminary items were linked to a total of 184 categories of ICF-CY, and belonged mainly to two out of the four of the ICF-CY components. Fifteen of the items were not linked to any category of the ICF-CY classification at all. The linking process showed that more than 90% of CBE preliminary items were linked to ICF-CY categories and more than 4/5 of them were linked to the ICF-CY component of environmental factors. CONCLUSION: The fact that most of the linked CBE preliminary items referred to few ICF categories, on one hand showed that the ICF framework encompasses a lot of different aspects related to functioning and disability; on the other hand ICF categories are not very detailed for a comprehensive description of the built environment features

The selection of items for the preliminary version of the COURAGE in Europe built environment instrument

The built environment can increase or decrease disability through its impact on mobility or accessibility to infrastructures, and through its relation to social environment. There is a need for the development of a tool which allows to assess built environment in both objective and self-reported manner, contemplating also issues of accessibility and disability, and that allows data comparability across countries and populations. The present paper describes the preliminary process of the development of a new built environment instrument. It describes the process of the selection, creation and categorisation of a pool of items from the 31 instruments resulting from the UDHP Project. A pool of items was created and was used to produce two lists: the outdoor checklist, and the self-reported questionnaire. These two lists formed the basis of the COURAGE in Europe built environment instrument. The outcome of this selection and categorisation process was the creation of two lists of items, that are meant to measure the interaction between the built environment and aspects of health and disability in ageing

Social capital, disability, and usefulness of the International Classification of Functioning, Disability and Health for the development and monitoring of policy interventions

This paper provides theoretical links between the model of health and disability based on the International Classification of Functioning, Disability and Health (ICF) and the complex notion of ‘social capital’. In practice, social capital mechanisms could contribute to better health through their use in health-promotion actions, and, in general, through their integration in inclusive policies and systems for facilitating the biopsychosocial model of disability. The present paper shows how ICF could offer an informational platform for conceptualizing and potentially measuring the causal linkages between social capital and health and disability

Social capital and self-rated health among older adults: a comparative analysis of Finland, Poland and Spain

The aim of this paper is to investigate the association between structural and cognitive aspects of social capital and self-rated health among adults aged 50 or more, living in three countries: Finland, Poland and Spain. The study, which was based on data from the European Social Survey (2008/09), was a part of the EU research project COURAGE in Europe. More specifically the paper assesses the association between social capital indicators – informal social network and general trust – and good self-rated health through single-level and joint effects analyses. The results showed that Finland was a country of high social capital, in terms of both social networks and general trust, while Spain showed low levels of general trust and Poland low levels of informal social networks. As to the association between social capital and self-rated health, high levels of general trust and high networks were found to be associated with good health among all countries' respondents. Older persons living in partnerships, with higher education, higher levels of engagement in informal networks and general trust, were found to be more likely to show good self-rated health. Our comparative analyses revealed different associations between social capital and health according to country

Perceived efficacy of salbutamol by persons with spinal muscular atrophy: a mixed methods study

Introduction: The aim of this study was to assess the perceived effect of salbutamol in adult patients with spinal muscular atrophy and to evaluate the usefulness of the World Health Organization Disability Assessment Schedule II (WHODAS II) and Fatigue Severity Scale (FSS) for its measurement. Methods: A longitudinal mixed methods study was performed. Ten patients were interviewed and completed WHODAS II and FSS questionnaires to assess disability and fatigue at 2 time-points. Inductive thematic analysis was used for qualitative data. The non-parametric Wilcoxon test was performed for quantitative analysis. Results: All participants reported an improvement in their condition after salbutamol consumption. WHODAS II and FSS reliably captured changes in patients' disability and fatigue. Conclusions: The mixed methods design allowed us to identify the functional domains in which participants experienced effects of salbutamol. Patients were satisfied with the treatment as shown by decreased fatigue, improved functioning, and infrequent side effects. Muscle Nerve, 2016 Muscle Nerve54: 843-849, 201