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Transition from child-centred to adult-oriented health services occurs at a time when young people are going through adolescence, with all the excitement and uncertainty that accompanies it. Most elements of good transitional care for young people with disabilities are the same as those for all young people with long term conditions. The article discusses ‘Developmentally Appropriate Healthcare’, the NICE guidance on transition, and the implications of the NIHR funded Research Programme on Transition, 2012–2017. However, additional consideration should be given to those with: • physical impairments such as cerebral palsy • mental health problems, including autism spectrum disorder, attention deficit disorder with hyperactivity or severe learning difficulties • isolated sensory impairments • very complex needs, requiring multi-sectoral packages of care It is crucial to aim to retain the engagement of a young person, even if he or she may not always attach to their healthcare the importance their clinician's think they should. Three key practical points are: • For child services: prepare properly young people from age 12 for transfer so that it is regarded as an exciting part of growing up, rather than a cliff from which to fall • For adult and child services: keep parents involved in a manner that suits both young person and parent • For adult and child services: ensure the young person and parents can meet the adult team at least once before transfer [ABSTRACT FROM AUTHOR]

Background: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion.Aims: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years.Methods: The sample is the 594 children with CP, born 31/07/1991-01/04/1997, who took part in the SPARCLE study at age 8-12 (SPARCLE 1) and again at 13-17 years (SPARCLE 2). Participants were randomly sampled from population registers of children with CP in eight European regions; one further region recruited from multiple sources. Data about environment were captured with the European Child Environment Questionnaire (60 items). Differences in availability of environmental features between childhood and adolescence were assessed using McNemar's test; differences between regions were assessed by ranking regions. Differences in availability between regions were assessed by ranking regions.Results: For seven environmental features significantly (p<0.01) fewer individuals needed the feature in SPARCLE 2 than in SPARCLE 1, whilst for two features more individuals needed the feature. Nine features in SPARCLE 1 and six features in SPARCLE 2 were available to less than half the participants who needed them. Eight features showed significantly (p<0.01) higher availability in SPARCLE 2 than in SPARCLE 1 (enlarged rooms, adapted toilet, modified kitchen and hoists at home, adapted toilets and lifts at school, an adequate vehicle, grants for home modifications) while none showed significantly lower availability. The relative rankings of the better and less good regions persisted from the age 8-12year age group to the 13-17year age group.Conclusions: Needed environmental features are unavailable to many children at ages 8-12 and 13-17 years. This lack of availability is more pronounced in some regions than others, which probably results from their policy, legislative and statutory frameworks. [ABSTRACT FROM AUTHOR]

Purpose This study sought to identify and describe the views of young people with chronic conditions about the transition from pediatric to adult services. Methods Q methodology was used to identify young people's views on transition. A set of 39 statements about transition was developed from an existing literature review and refined in consultation with local groups of young people. Statements were printed onto cards and a purposive sample of 44 young people with chronic health conditions was recruited, 41 remaining in the study. The young people were asked to sort the statement cards onto a Q-sort grid, according to their opinions from “strongly disagree” to “strongly agree.” Factor analysis was used to identify shared points of view (patterns of similarity between individual's Q-sorts). Results Four distinct views on transition were identified from young people: (1) “a laid-back view of transition;” (2) “anxiety about transition;” (3) “wanting independence and autonomy during transition;” and (4) “valuing social interaction with family, peers, and professionals to assist transition.” Conclusions Successful transition is likely to be influenced by how young people view the process. Discussing and understanding young people's views and preferences about transition should help clinicians and young people develop personalized planning for transition as a whole, and more specifically the point of transfer, leading to effective and efficient engagement with adult care. [ABSTRACT FROM AUTHOR]

Cerebral palsy has tended to be regarded as a paediatric condition, whereas it clearly is a life long one. The over-emphasis on childhood has meant that the implications of therapeutic, environmental and family support have not been provided or evaluated in terms of their implications for adult life; nor has study of the natural history of cerebral palsy in adulthood received the attention it deserves; and nor have the outcomes of social participation and subjective wellbeing been properly considered in adulthood. In this review, outcomes in adulthood of life expectancy, subjective wellbeing, participation, mental health, physical health including pain, and impact on family are presented. On all these domains, adults with cerebral palsy have poorer outcomes than in the general population. It is argued that this may be due in part to misplaced interventions in childhood. [ABSTRACT FROM AUTHOR]

We investigated whether childhood factors that are amenable to intervention (parenting stress, child psychological problems and pain) predicted participation in daily activities and social roles of adolescents with cerebral palsy (CP). We randomly selected 1174 children aged 8-12 years from eight population-based registers of children with CP in six European countries; 743 (63%) agreed to participate. One further region recruited 75 children from multiple sources. These 818 children were visited at home at age 8-12 years, 594 (73%) agreed to follow-up at age 13-17 years. We used the following measures: parent reported stress (Parenting Stress Index Short Form), their child's psychological difficulties (Strength and Difficulties Questionnaire) and frequency and severity of pain; either child or parent reported the child's participation (LIFE Habits questionnaire). We fitted a structural equation model to each of the participation domains, regressing participation in childhood and adolescence on parenting stress, child psychological problems and pain, and regressing adolescent factors on the corresponding childhood factors; models were adjusted for impairment, region, age and gender. Pain in childhood predicted restricted adolescent participation in all domains except Mealtimes and Communication (standardized total indirect effects β -0.05 to -0.18, 0.01

Abstract: Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services. [Copyright &y& Elsevier]

Abstract: Colver A, Thyen U, Arnaud C, Beckung E, Fauconnier J, Marcelli M, McManus V, Michelsen SI, Parkes J, Parkinson K, Dickinson HO. Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study. Arch Phys Med Rehabil 2012;93:2154-64. Objective: To evaluate how participation of children with cerebral palsy (CP) varied with their environment. Design: Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child''s impairments and pain. Setting: European regions with population-based registries of children with CP. Participants: Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study. Interventions: Not applicable. Main Outcome Measure: Participation in life situations. Results: For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities—mealtimes, health hygiene, personal care, and home life—was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation. Conclusions: The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles. [Copyright &y& Elsevier]

Abstract: Cerebral palsy has tended to be regarded as a paediatric condition, whereas it clearly is a lifelong one. The over-emphasis on childhood has meant that the implications of therapeutic, environmental and family support have not been provided or evaluated in terms of their implications for adult life; nor has study of the natural history of cerebral palsy in adulthood received the attention it deserves; and nor have the outcomes of social participation and subjective wellbeing been properly considered in adulthood. In this review, outcomes in adulthood of life expectancy, subjective wellbeing, participation, mental health, physical health including pain, and impact on family are presented. On all these domains, adults with cerebral palsy have poorer outcomes than in the general population. It is argued that this may be due in part to misplaced interventions in childhood. [Copyright &y& Elsevier]

Abstract: Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services. We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation. We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8–12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire. Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out. In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life. [Copyright &y& Elsevier]

Abstract: This review discusses quality of life (QoL), the different ways the phrase has been used and the findings of studies that have measured it in disabled children. Assessment of QoL is important because it gives a voice to children, in accordance with two United Nations conventions. Studies tend to show that QoL of disabled children is similar to that of the general population and that pain and some impairments influence some domains of QoL. There is widespread acceptance of the need for disabled children to be fully integrated into society but there needs to be further attitudinal change. QoL studies tell us that pity and sorrow should not be directed to disabled children as they experience most of life as nondisabled children do. Maximum effort is needed to support social and educational policies that recognize the similarity of the lives of disabled children to those of other children and that ensure their right as citizens, rather than as disabled children, to [0]participate as fully in society as other children. [Copyright &y& Elsevier]

Objective: To investigate the association between severity of impairment and gestational age in unilateral and bilateral spastic cerebral palsy, and to determine whether the influence of gestational age is independent of deviations from optimal birth weight. Study design: The study group was a United Kingdom cohort of 4772 cases of spastic cerebral palsy born between 1960 and 1997, with information on birth demographics and severity of impairment. Generalized additive models were used to determine the proportions of cases severely impaired, by gestational age, and to determine whether gestational age or deviations from optimal birth weight better predicts severity of impairment. Results: For unilateral spastic cerebral palsy, the proportions of severe impairments did not vary with gestational age. In contrast, for bilateral spastic cerebral palsy, the proportions of severe motor or cognitive impairments increased with increasing gestational age (e.g., from 20% to 50% between weeks 30 and 40 for cognitive impairment). For spastic cerebral palsy, gestational age is at least as good as deviation from optimal birth weight in predicting severity. Conclusions: The severity of impairment increases with increasing gestational age in bilateral spastic cerebral palsy. This suggests differing etiologies in term and preterm infants and supports the theory that the developing brain is better able to compensate after a cerebral insult. [Copyright &y& Elsevier]

Purpose: The etiology of congenital cerebral palsy is unclear. Recent studies have suggested that maternal infection is involved. Indirect, but supportive, evidence for an infectious hypothesis would be provided by the finding of space-time clustering. Methods: We analyzed all 906 cases born during the period 1991–2003 using a population-based registry from Northern England. We applied the K-function method for testing global space-time clustering and used residential addresses at the time of birth. The Knox method was used to determine the spatio-temporal range over which global clustering occurred. Tests were repeated using nearest neighbor thresholds to allow for variable population density. Additionally, Kulldorff''s scan statistic identified specific space-time clusters. Results: There was statistically significant evidence of global space-time clustering (p ≤ 0.05). Clustering occurred over a range of close distances, but was most pronounced for cases born within 1–4 months of one another. A specific space-time cluster was identified during 1994. Conclusions: The application of spatial statistics for the study of cerebral palsy is novel. There is tentative evidence for the involvement of spatially and temporally varying environmental etiological factors. These findings may support a role for infections or similar agents. However, the role of chance cannot be excluded. [Copyright &y& Elsevier]

Summary: The social model of disability and the new sociology of childhood emphasise, respectively, the relevance of the environment to participation and the importance of quality of life. Such ideas can be readily understood by and shared between parents, young disabled people, professionals and planners; they also make clearer what we are trying to do when supporting disabled children and their families. This article discusses these concepts and emphasises the importance of expressing them in quantitative terms if they are to influence research, planning and clinical practice. [Copyright &y& Elsevier]

Aim: Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL.Method: SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8-12-year-olds joining the study, 594 (73%) were revisited as 13-17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression.Results: Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p<0.01) and was stable in three (Physical wellbeing, Autonomy, Social acceptance). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%-40% of variance in QoL, depending on domain.Interpretation: In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL. [ABSTRACT FROM AUTHOR]

Highlights: [•] The Viking Speech Scale classifies the speech of children with cerebral palsy. [•] Parents and health professionals judge the Scale as valid and easy to use. [•] The Scale can be applied from direct observation of the child or using case notes. [Copyright &y& Elsevier]

Objective: To assess if the Rasch-scaled KIDSCREEN-52 generic health-related quality of life measure was valid in children with cerebral palsy (CP). Methods: The Rasch measurement properties and differential item functioning (DIF) of the KIDSCREEN-52 were examined in children with CP. Data were available from the KIDSCREEN project from 3219 children aged 8 to 12 years and 2126 parents in the general population; and from the SPARCLE project from 501 children aged 8 to 12 years with CP and 823 parents. Analysis used Zumbo's logistic regression DIF approach. Partial credit model analyses were conducted. Results: All items of the KIDSCREEN self-report version fitted the partial credit model (smallest P-value: 0.256). Only one item of the parent version did not fit the data well (smallest P-value 0.001). Statistically significant DIF was observed in some items, but was of substantial magnitude (Δ R2 = 0.046, 0.049) for only two items in two dimensions of the parent version. The practical impact of DIF was small. DIF-adjusted standardized mean differences between children with and without CP being 1.07 and 0.34 for the physical and school dimensions, respectively (unadjusted: 1.09 and 0.16). Conclusion: The KIDSCREEN-52 functions in a similar way in children with CP and in the general population. Comparisons of quality of life between such children are therefore likely to be valid. [ABSTRACT FROM AUTHOR]