Falling through the gaps: exploring the role of integrated commissioning in improving transition from children’s to adults' services for young people with long-term health conditions in England

Objectives: To explore the role of integrated commissioning in improving the transition of young people with longterm conditions from child to adult services. We aimed to identify organizational and policy gaps around transition services and provide recommendations for integrated commissioning practice. Methods: Semi-structured in-depth interviews were conducted with two groups of participants: (1) twenty-four stakeholders involved in the commissioning and provision of transition services for young people with long-term conditions in two regions in England; (2) five professionals with national roles in relation to planning for transition. Transcripts were interrogated using thematic analysis. Results: There is little evidence of integrated commissioning for transitional care for young people with long-term conditions. Commissioners perceive there to be a lack of national and local policy to guide integrated commissioning for transitional care; and limited resources for transition. Furthermore, commissioning organizations responsible for transition have different cultures, funding arrangements and related practices which make inter- and intra-agency co-ordination and cross-boundary continuity of care difficult to achieve. Conclusions: Integrated commissioning may be an effective way to achieve successful transitional care for young people with long-term health conditions. However, this innovative relational approach to commissioning requires a national steer together with recognition of common values and joint ownership between relevant stakeholders

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Study protocol: Determinants of participation and quality of life of adolescents with cerebral palsy: a longitudinal study (SPARCLE2)

<p>Abstract</p> <p>Background</p> <p>Children and adults with impairments such as cerebral palsy have lower participation in life situations than able-bodied people. Less is known about their subjective perception of their lives, called their quality of life.</p> <p>During adolescence, rapid physical and psychological changes occur; although these may be more difficult for disabled than for able-bodied adolescents, little research has examined the lives of disabled adolescents.</p> <p>In 2003-4 a European Union funded project, SPARCLE, visited 818 children aged 8-12 years with cerebral palsy, sampled from population-based registers in nine European regions. The quality of life reported by these disabled children was similar to that of the general population but their participation was lower; levels of participation varied between countries even for children with similar severity of cerebral palsy.</p> <p>We are currently following up these children, now aged 13-17 years, to identify (i) to what extent contemporaneous factors (pain, impairment, psychological health and parental stress) predict their participation and quality of life, (ii) what factors modify how participation and quality of life at age 8-12 years are associated with participation and quality of life in adolescence, and (iii) whether differences between European countries in participation and quality of life can be explained by variations in environmental factors.</p> <p>Methods/Design</p> <p>Trained researchers will visit families to administer questionnaires to capture the adolescents' type and severity of impairment, socio-demographic characteristics, participation, quality of life, psychological health, pain, environmental access and parental stress. We will use multivariable models (linear, logistic or ordinal) to assess how adolescent participation, quality of life, psychological health, pain, environmental access and parental stress, vary with impairment and socio-demographic characteristics and, where possible, how these outcomes compare with general population data. For participation and quality of life, longitudinal analyses will assess to what extent these are predicted by corresponding levels in childhood and what factors modify this relationship. Structural equation modelling will be used to identify indirect relationships mediated by other factors.</p

Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme

Background: As young people with long-term conditions move from childhood to adulthood, their health may deteriorate and their social participation may reduce. ‘Transition’ is the ‘process’ that addresses the medical, psychosocial and educational needs of young people during this time. ‘Transfer’ is the ‘event’ when medical care moves from children’s to adults’ services. In a typical NHS Trust serving a population of 270,000, approximately 100 young people with long-term conditions requiring secondary care reach the age of 16 years each year. As transition extends over about 7 years, the number in transition at any time is approximately 700. Objectives: Purpose – to promote the health and well-being of young people with long-term conditions by generating evidence to enable NHS commissioners and providers to facilitate successful health-care transition. Objectives – (1) to work with young people to determine what is important in their transitional health care, (2) to identify the effective and efficient features of transitional health care and (3) to determine how transitional health care should be commissioned and provided. Design, settings and participants: Three work packages addressed each objective. Objective 1. (i) A young people’s advisory group met monthly throughout the programme. (ii) It explored the usefulness of patient-held health information. (iii) A ‘Q-sort’ study examined how young people approached transitional health care. Objective 2. (i) We followed, for 3 years, 374 young people with type 1 diabetes mellitus (150 from five sites in England), autism spectrum disorder (118 from four sites in England) or cerebral palsy (106 from 18 sites in England and Northern Ireland). We assessed whether or not nine proposed beneficial features (PBFs) of transitional health care predicted better outcomes. (ii) We interviewed a subset of 13 young people about their transition. (iii) We undertook a discrete choice experiment and examined the efficiency of illustrative models of transition. Objective 3. (i) We interviewed staff and observed meetings in three trusts to identify the facilitators of and barriers to introducing developmentally appropriate health care (DAH). We developed a toolkit to assist the introduction of DAH. (ii) We undertook a literature review, interviews and site visits to identify the facilitators of and barriers to commissioning transitional health care. (iii) We synthesised learning on ‘what’ and ‘how’ to commission, drawing on meetings with commissioners. Main outcome measures: Participation in life situations, mental well-being, satisfaction with services and condition-specific outcomes. Strengths: This was a longitudinal study with a large sample; the conditions chosen were representative; non-participation and attrition appeared unlikely to introduce bias; the research on commissioning was novel; and a young person’s group was involved. Limitations: There is uncertainty about whether or not the regions and trusts in the longitudinal study were representative; however, we recruited from 27 trusts widely spread over England and Northern Ireland, which varied greatly in the number and variety of the PBFs they offered. The quality of delivery of each PBF was not assessed. Owing to the nature of the data, only exploratory rather than strict economic modelling was undertaken. Results and conclusions: (1) Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years. Our findings indicate an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services with whom responsibility for transitional health care currently lies. (2) DAH is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders. (3) Good practice led by enthusiasts rarely generalised to other specialties or to adults’ services. This indicates the importance of NHS Trusts adopting a trust-wide approach to implementation of transitional health care. (4) Adults’ and children’s services were often not joined up. This indicates the importance of adults’ clinicians, children’s clinicians and general practitioners planning transition procedures together. (5) Young people adopted one of four broad interaction styles during transition: ‘laid back’, ‘anxious’, ‘wanting autonomy’ or ‘socially oriented’. Identifying a young person’s style would help personalise communication with them. (6) Three PBFs of transitional health care were significantly associated with better outcomes: ‘parental involvement, suiting parent and young person’, ‘promotion of a young person’s confidence in managing their health’ and ‘meeting the adult team before transfer’. (7) Maximal service uptake would be achieved by services encouraging appropriate parental involvement with young people to make decisions about their care. A service involving ‘appropriate parental involvement’ and ‘promotion of confidence in managing one’s health’ may offer good value for money. Future work: How might the programme’s findings be implemented by commissioners and health-care providers? What are the most effective ways for primary health care to assist transition and support young people after transfer

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

CISTECTOMIA RADICAL ROBÓTICA NO TRATAMENTO DE CÂNCER DE BEXIGA: REVISÃO INTEGRATIVA

Introduction: Bladder cancer remains the most common malignant neoplasm of the urinary tract. The gold standard treatment is open radical cystectomy. Minimally invasive surgical techniques, such as robot-assisted cystectomy, have been widely used. Objectives: To compare the robotic approach with the conventional open technique. Methodology: This is an integrative review, in which the guiding question was "What are the advantages of the robot-assisted technique in cystectomy of patients with bladder cancer compared to open radical cystectomy?". The search for articles was conducted in the PubMed database using the terms "cystectomy", "robot-assisted" and "cancer" combined with Boolean operators. Results and discussion: Robotic cystectomy was able to improve overall body function when compared to open surgery, in addition to enabling better quality of life and lower mortality. However, there was an increase in reports of urinary symptoms. Conclusion: Therefore, we conclude that robotic cystectomy can provide a better postoperative period for the patient and is also superior in relation to quality of life after the surgical procedure. However, an increase is observed regarding urinary symptoms. Thus, more studies should be done to observe the best approach depending on the condition of the patient who will undergo cystectomy.Introducción: El cáncer de vejiga sigue siendo la neoplasia maligna más frecuente del tracto urinario. El tratamiento de referencia es la cistectomía radical abierta. Las técnicas quirúrgicas mínimamente invasivas, como la cistectomía asistida por robot, se han utilizado ampliamente. Objetivos: Comparar el abordaje robótico con la técnica abierta convencional. Metodología: Se trata de una revisión integradora, en la que la pregunta norteadora fue "¿Cuáles son las ventajas de la técnica asistida por robot en la cistectomía de pacientes portadores de cáncer de córnea en comparación con la cistectomía radical abierta?". La búsqueda de artículos se realizó en la base de datos PubMed utilizando los términos "cystectomy", "robot-assisted" y "cancer" combinados con operadores booleanos. Resultados y discusión: La cistectomía robótica fue capaz de mejorar la función corporal general en comparación con la cirugía abierta, además de permitir una mejor calidad de vida y una menor mortalidad. Sin embargo, hubo un aumento en los informes de síntomas urinarios. Conclusión: Por lo tanto, se concluye que la cistectomía robótica es capaz de brindar un mejor postoperatorio al paciente, siendo también superior en cuanto a la calidad de vida después del procedimiento quirúrgico. Sin embargo, se observa un aumento en cuanto a los síntomas urinarios. Por lo tanto, se deben realizar más estudios para observar el mejor abordaje según la condición del paciente que se someterá a la cistectomía.O câncer de bexiga continua sendo a neoplasia maligna mais comum do trato urinário. O tratamento padrão-ouro é a cistectomia radical aberta. Técnicas cirúrgicas minimamente invasivas, como a cistectomia assistida por robô, têm sido amplamente utilizadas. Objetivos: Comparar a abordagem robótica com a técnica aberta convencional. Metodologia: Trata-se de uma revisão integrativa, em que a questão norteadora foi “Quais as vantagens da técnica assistida por robô na cistectomia de pacientes portadores de câncer de bexiga em comparação à cistectomia radical aberta?”. A busca pelos artigos ocorreu na base de dados PubMed a partir dos termos “cystectomy”, "robot-assisted" e “cancer” combinados entre si por operadores booleanos. Resultados e discussão: A cistectomia robótica foi capaz de melhorar a função geral do organismo, quando comparada a cirurgia aberta, além de possibilitar melhor qualidade de vida e menor mortalidade. Entretanto, houve aumento de relatos de sintomas urinários. Conclusão: Portanto, conclui-se que a cistectomia robótica é capaz de possibilitar um melhor período pós-operatório ao paciente, sendo superior também em relação à qualidade de vida após o procedimento cirúrgico. Contudo, é observado um aumento no que diz respeito aos sintomas urinários. Assim, devem ser feitos mais estudos para que se observe a melhor abordagem a depender do quadro do paciente que será submetido à cistectomia.Introdução: O câncer de bexiga continua sendo a neoplasia maligna mais comum do trato urinário. O tratamento padrão-ouro é a cistectomia radical aberta. Técnicas cirúrgicas minimamente invasivas, como a cistectomia assistida por robô, têm sido amplamente utilizadas. Objetivos: Comparar a abordagem robótica com a técnica aberta convencional. Metodologia: Trata-se de uma revisão integrativa, em que a questão norteadora foi “Quais as vantagens da técnica assistida por robô na cistectomia de pacientes portadores de câncer de bexiga em comparação à cistectomia radical aberta?”. A busca pelos artigos ocorreu na base de dados PubMed a partir dos termos “cystectomy”, "robot-assisted" e “cancer” combinados entre si por operadores booleanos. Resultados e discussão: A cistectomia robótica foi capaz de melhorar a função geral do organismo, quando comparada a cirurgia aberta, além de possibilitar melhor qualidade de vida e menor mortalidade. Entretanto, houve aumento de relatos de sintomas urinários. Conclusão: Portanto, conclui-se que a cistectomia robótica é capaz de possibilitar um melhor período pós-operatório ao paciente, sendo superior também em relação à qualidade de vida após o procedimento cirúrgico. Contudo, é observado um aumento no que diz respeito aos sintomas urinários. Assim, devem ser feitos mais estudos para que se observe a melhor abordagem a depender do quadro do paciente que será submetido à cistectomia

Study protocol: SPARCLE – a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy

BACKGROUND: SPARCLE is a nine-centre European epidemiological research study examining the relationship of participation and quality of life to impairment and environment (physical, social and attitudinal) in 8–12 year old children with cerebral palsy. Concepts are adopted from the International Classification of Functioning, Disability and Health which bridges the medical and social models of disability. METHODS/DESIGN: A cross sectional study of children with cerebral palsy sampled from total population databases in 9 European regions. Children were visited by research associates in each country who had been trained together. The main instruments used were KIDSCREEN, Life-H, Strength and Difficulties Questionnaire, Parenting Stress Index. A measure of environment was developed within the study. All instruments were translated according to international guidelines. The potential for bias due to non response and missing data will be examined. After initial analysis using multivariate regression of how the data captured by each instrument relate to impairment and socio-economic characteristics, relationships between the latent traits captured by the instruments will then be analysed using structural equation modelling. DISCUSSION: This study is original in its methods by directly engaging children themselves, ensuring those with learning or communication difficulty are not excluded, and by studying in quantitative terms the crucial outcomes of participation and quality of life. Specification and publication of this protocol prior to analysis, which is not common in epidemiology but well established for randomised controlled trials and systematic reviews, should avoid the pitfalls of data dredging and post hoc analyses