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BACKGROUND: Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services. METHODS: This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14-18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up. Outcome measures were Warwick Edinburgh Mental Wellbeing Scale, Mind the Gap Scale (satisfaction with services), Rotterdam Transition Profile (Participation) and Autonomy in Appointments. RESULTS: Exposure to recommended features was 61% for 'coordinated team', 53% for 'age-banded clinic', 48% for 'holistic life-skills training', 42% for 'promotion of health self-efficacy', 40% for 'meeting the adult team before transfer', 34% for 'appropriate parent involvement' and less than 30% for 'written transition plan', 'key worker' and 'transition manager for clinical team'. Three features were strongly associated with improved outcomes. (1) 'Appropriate parent involvement', example association with Wellbeing (b = 4.5, 95% CI 2.0-7.0, p = 0.001); (2) 'Promotion of health self-efficacy', example association with Satisfaction with Services (b = - 0.5, 95% CI - 0.9 to - 0.2, p = 0.006); (3) 'Meeting the adult team before transfer', example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1-12.8, p < 0.001) and with Autonomy in Appointments (average 1.7 points higher, 95% CI 0.8-2.6, p < 0.001). There was slightly less recruitment of participants from areas with greater socioeconomic deprivation, though not with respect to family composition. CONCLUSIONS: Three features of transitional care were associated with improved outcomes. Results are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Results are relevant for clinicians as well as for commissioners and managers of health services. The challenge of introducing these three features across child and adult healthcare services, and the effects of doing so, should be assessed.
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Servicios de Salud/tendencias , Adolescente , Protocolos Clínicos , Estudios de Cohortes , Femenino , Humanos , Estudios Longitudinales , MasculinoRESUMEN
AIM: We hypothesized that participant well-being and satisfaction with services would be positively associated with a satisfactory clinical course during transition from child to adult health care. METHODS: Some 150 young people with Type 1 diabetes mellitus from five diabetes units in England were recruited to a longitudinal study of transition. Each young person was visited at home four times by a research assistant; each visit was 1 year apart. Satisfaction with services (Mind the Gap; MTG) and mental well-being (Warwick-Edinburgh Mental Well-being Scale; WEMWBS) were captured. Change in HbA1c , episodes of ketoacidosis, clinic and retinal screening attendance were used to assess clinical course. In total, 108 of 150 (72%) young people had sufficient data for analysis at visit 4. RESULTS: Mean age at entry was 16 years. By visit 4, 81.5% had left paediatric healthcare services. Median HbA1c increased significantly (P = 0.01) from 69 mmol/mol (8.5%) at baseline to 75 mmol/mol (9.0%) at visit 4. WEMWBS scores were comparable with those in the general population at baseline and were stable over the study period. MTG scores were also stable. By visit 4, some 32 individuals had a 'satisfactory' and 76 a 'suboptimal' clinical course. There were no significant differences in average WEMWBS and MTG scores between the clinical course groups (P = 0.96, 0.52 respectively); nor was there a significant difference in transfer status between the clinical course groups. CONCLUSIONS: The well-being of young people with diabetes and their satisfaction with transition services are not closely related to their clinical course. Investigating whether innovative psycho-educational interventions can improve the clinical course is a research priority.
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BACKGROUND: For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them 'proposed beneficial features': age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team. We aimed to describe the extent to which service providers offer these nine features, and to compare this with young people's reported experience of them. METHODS: A longitudinal, mixed methods study followed 374 young people as their care moved from child to adult health services. Participants had type 1 diabetes, cerebral palsy or autism spectrum disorder with additional mental health difficulties. Data are reported from the first two visits, one year apart. RESULTS: Three hundred four (81.3%) of the young people took part in the second visit (128 with diabetes, 91 with autism, 85 with cerebral palsy). Overall, the nine proposed beneficial features of transition services were poorly provided. Fewer than half of services stated they provided an age-banded clinic, written transition plan, transition manager for clinical team, a protocol for promotion of health self-efficacy, or holistic life-skills training. To varying degrees, young people reported that they had not experienced the features which services said they provided. For instance, the agreement for written transition plan, holistic life-skills training and key worker, was 30, 43 and 49% respectively. Agreement was better for appropriate parent involvement, age-banded clinic, promotion of health self-efficacy and coordinated team at 77, 77, 80 and 69% respectively. Variation in the meaning of the features as experienced by young people and families was evident from qualitative interviews and observations. CONCLUSIONS: UK services provide only some of the nine proposed beneficial features for supporting healthcare transition of young people with long term conditions. Observational studies or trials which examine the influence of features of transition services on outcomes should ensure that the experiences of young people and families are captured, and not rely on service specifications.
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Trastorno del Espectro Autista/terapia , Parálisis Cerebral/terapia , Diabetes Mellitus Tipo 1/terapia , Satisfacción del Paciente , Calidad de la Atención de Salud , Transición a la Atención de Adultos , Adolescente , Trastorno del Espectro Autista/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Transición a la Atención de Adultos/normas , Reino Unido , Adulto JovenRESUMEN
BACKGROUND: The transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services. METHODS: We recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3-year longitudinal study. Reported needs were measured with an 11-item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses. RESULTS: A high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services. CONCLUSIONS: Reporting of unmet needs can indicate where service development is required, and we have shown that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination.
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Parálisis Cerebral/terapia , Calidad de la Atención de Salud/normas , Transición a la Atención de Adultos , Adolescente , Parálisis Cerebral/psicología , Femenino , Estudios de Seguimiento , Necesidades y Demandas de Servicios de Salud , Humanos , Estudios Longitudinales , Masculino , Evaluación de Procesos, Atención de Salud , Literatura de Revisión como Asunto , Encuestas y Cuestionarios , Transición a la Atención de Adultos/normas , Adulto JovenRESUMEN
BACKGROUND: Autism spectrum disorder can in some cases be reliably diagnosed by age 2 years, but in community settings, the mean age at diagnosis is often considerably higher. Later diagnosis has been found to be associated with lower symptom severity, lower parental socioeconomic status and fewer parental concerns. Gender differences in age at diagnosis have been examined, with mixed evidence. METHODS: We examined the association of child's verbal ability and gender, and parental education, with age at diagnosis in a large sample of young children with autism spectrum disorder in 18 European countries (n = 1410). RESULTS: There was considerable variation in age at diagnosis across countries. Children with better communication skills were diagnosed significantly later than non-verbal and minimally verbal children. There was also a significant interaction of gender with verbal ability on age at diagnosis, in that female children with complex phrase speech were diagnosed later than male children with the same level of verbal ability. CONCLUSIONS: Our findings highlight the need to implement public awareness initiatives and training for professionals to promote early detection and, consequently, early intervention for autism spectrum disorder in Europe.
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Trastorno del Espectro Autista/diagnóstico , Trastornos del Desarrollo del Lenguaje/etiología , Padres/educación , Aprendizaje Verbal , Factores de Edad , Trastorno del Espectro Autista/epidemiología , Trastorno del Espectro Autista/fisiopatología , Niño , Preescolar , Diagnóstico Precoz , Europa (Continente)/epidemiología , Femenino , Humanos , Trastornos del Desarrollo del Lenguaje/epidemiología , Trastornos del Desarrollo del Lenguaje/fisiopatología , Masculino , Padres/psicología , Índice de Severidad de la Enfermedad , Factores SexualesRESUMEN
OBJECTIVE: To validate a Rapid Neurodevelopmental Assessment (RNDA) tool for use by child health professionals to determine neurodevelopmental impairments (NDIs) in young adolescents aged 10-16 years in Bangladesh. STUDY DESIGN: In a convenience sample of community children (n = 47), inter-rater reliability was determined between four testers, and concurrent validity was determined by simultaneous administration of an intelligence quotient (IQ) test (Wechsler Intelligence Scale for Children, Revised) by a child psychologist. RESULTS: Inter-rater reliability was excellent between the testers on the 47 children administered the RNDA (kappa = 1.00). Significantly lower IQ scores were obtained in those identified with 'any (>1) NDI' (n = 34) compared with those with no NDI (n = 13) on Verbal IQ (P-value < 0.0001), Performance IQ (P-value < 0.0001) and Full-scale IQ (P-value < 0.0001) scores on the Wechsler Intelligence Scale for Children, Revised. CONCLUSION: The RNDA shows promise as a tool for use by child health professionals for identifying NDIs in young adolescents aged 10-16 years. A larger study sample is needed to determine its usefulness for identification of some impairments not found in the study population, i.e. gross motor, fine motor, hearing and seizures.
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Discapacidades del Desarrollo/diagnóstico , Pruebas Neuropsicológicas , Adolescente , Bangladesh , Niño , Países en Desarrollo , Técnicas de Diagnóstico Neurológico , Evaluación de la Discapacidad , Femenino , Humanos , Inteligencia , Pruebas de Inteligencia , Masculino , Tamizaje Masivo/métodos , Reproducibilidad de los Resultados , Factores SocioeconómicosRESUMEN
Research groups across Europe have been networking to share information and ideas about research on preschool children with autism. The paper describes preliminary work to develop capacity for future multi-site randomized controlled trials of early intervention, with a specific focus on the need to measure treatment adherence where parents deliver therapy. The paper includes a review of randomized and controlled studies of parent-mediated early intervention from two sources, a recent Cochrane Collaboration review and a mapping of European early intervention studies in autism published since 2002. The data extracted focused on methods for describing parent adherence, that is, how and to what extent parents carry out the strategies taught them by therapists. Less than half of the 32 studies reviewed included any measure of parent adherence. Only seven included a direct assessment method. The challenges of developing pan-European early intervention evaluation studies are discussed, including choice of intervention model and of important outcomes, the need for translation of measurement tools and achievement of joint training to reliability of assessors. Measurement of parent-child interaction style and of adherence to strategies taught need further study.
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Trastorno Autístico/terapia , Creación de Capacidad/métodos , Ensayos Clínicos Controlados como Asunto/métodos , Intervención Educativa Precoz/métodos , Cooperación del Paciente , Niño , Medicina Basada en la Evidencia/normas , Humanos , Relaciones Padres-Hijo , Responsabilidad Parental , Padres/psicologíaRESUMEN
OBJECTIVES: The aims of this study were to determine whether UK child development teams (CDTs) have implemented good practice recommendations for the co-ordinated assessment and support of children with neurodisability and to explore some of the factors associated with variations in good practice implementation. DESIGN: Surveys were sent to every UK CDT in 2009/2010. Responses about CDT provision and ways of working were compared with good practice recommendations from national policy documents and professional organizations. The extent to which CDTs in England and Wales met 11 selected good practice recommendations was scored; teams in Scotland and Northern Ireland were given a score out of 9 to reflect the optional use of the common assessment framework and early support materials in these countries. RESULTS: Responses were received from 225/240 (94%) UK CDTs. Thirty-seven per cent of CDTs in England and Wales had implemented nine or more of the 11 recommendations. Fifty-nine per cent of teams in Scotland and 78% of teams in Northern Ireland met between six and nine recommendations of good working practice. Higher levels of implementation of recommendations were found when the CDT had a Child Development Centre base and for teams who had received increased funding in the 5 years preceding the survey. CONCLUSIONS: There was considerable variability in the degree to which CDTs implemented good practice recommendations for the diagnosis and management of children with neurodisability. Evidence about child and parent satisfaction, and the effectiveness of CDT practices and provision, is required, so policymakers, healthcare commissioners and clinicians can provide the most appropriate services to children with neurodisability and their families.
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Servicios de Salud del Niño/organización & administración , Trastornos del Neurodesarrollo/diagnóstico , Niño , Servicios de Salud del Niño/normas , Evaluación de la Discapacidad , Niños con Discapacidad , Manejo de la Enfermedad , Inglaterra , Encuestas de Atención de la Salud , Líneas Directas , Humanos , Trastornos del Neurodesarrollo/terapia , Grupo de Atención al Paciente/organización & administración , Gales , Carga de TrabajoRESUMEN
BACKGROUND: Compared with other conditions there has been a lack of focus on quality of life (QoL) as an outcome measure for children and young people with Autism Spectrum Disorder (ASD). This pilot study aimed to evaluate the validity of existing QoL questionnaires for use with children with ASD aged 8-12 years. METHODS: A literature review (1990-2011) identified the PedsQL (Pediatric Quality of Life Inventory) and Kidscreen as robust measures used with children with neurodevelopmental disorders. These measures were completed by 10 children and 11 parents. In addition semi-structured interviews were conducted with 10 parents and four children to explore their experience of completing the QoL questionnaires. RESULTS: Young people with ASD, and their parents, report lower child QoL compared with a normative sample. Framework analysis of the data highlighted six key themes which may affect the validity of generic QoL measures when administered within an ASD sample and which warrant further investigation. CONCLUSIONS: Our results indicate that a new condition-specific measure of QoL, grounded in ASD children's own perspectives of their lives, is needed and that such a measure should assess experiences of anxiety and access to special interests when measuring QoL of children with ASD. Active involvement of young people and their families is critical for the development of a theoretical framework for QoL within ASD, and any future development of an ASD-specific measure.
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Trastornos Generalizados del Desarrollo Infantil/psicología , Evaluación de Resultado en la Atención de Salud/normas , Calidad de Vida/psicología , Síndrome de Asperger/psicología , Niño , Femenino , Humanos , Masculino , Proyectos Piloto , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To identify how services provided by child development teams (CDTs) have changed over 20 years. To what extent have major government initiatives aiming to improve the lives of children with disability and their families been implemented by teams? DESIGN: Survey sent to every UK CDT in 2009/2010; comparison with data gathered in 1988 and 1999. RESULTS: Ninety-four per cent (225/240) of CDTs responded; data on 242 teams were available from 1999 and 125 teams from 1988. Despite policy recommendations advocating the value of interdisciplinary team working, there was a decline in numbers of professionals working within the CDT multidisciplinary team. One-third of all teams reported a reduction in their funding over the last 5 years. However, specialist clinics provided increased. Teams reported patchy adoption of national initiatives designed to improve provision. Transition services were underdeveloped. CONCLUSIONS: This comprehensive survey of UK CDT service provision, as well as national studies of the healthcare experience of families with a disabled child, shows that improvements in provision are required.
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Desarrollo Infantil , Servicios de Salud del Niño/organización & administración , Niños con Discapacidad/rehabilitación , Grupo de Atención al Paciente/organización & administración , Niño , Servicios de Salud del Niño/economía , Servicios de Salud del Niño/normas , Humanos , Grupo de Atención al Paciente/economía , Grupo de Atención al Paciente/normas , Asignación de Recursos/organización & administraciónRESUMEN
BACKGROUND: Gene-modifying trials offer hope for improvement in chronic paediatric disorders, but they may also lead to disappointment and have an adverse emotional effect on families. This study aimed to examine emotional impact on participants in a paediatric exon-skipping trial. METHODS: Nineteen male children with Duchenne muscular dystrophy (DMD), and their parents, taking part in a dose-ranging study of an i.v. administered morpholino splice-switching oligomer (which can restore the reading frame in DMD and induce dystrophin expression) underwent a psychosocial/psychiatric examination at trial entry. Emotional impact was assessed at trial completion using questionnaires. RESULTS: The mean child age was 8.9 years (SD 2.1); 13(68%) were attending mainstream school. Most families were well adjusted psychosocially at trial entry. Post-trial median child emotional impact scores were 5/10 (n= 18), but impact was rated as positive by 6/14 (42%), neutral/mixed by 5 (35%) and negative by 3 (21%). Median post-trial psychosocial/psychiatric change scores in children and parents were minimal. Actual post-trial negative impact was statistically significantly associated with higher expected impact at trial entry, at which time the families of the three children displaying actual negative impact reported higher family stress levels in combination with a variety of other psychosocial risks factors. CONCLUSIONS: In carefully selected families with low levels of psychosocial stress/distress at trial entry, and with good support from paediatric research units (including psychiatric input when required), genetic trials in progressive disorders such as DMD can have a predominantly positive or neutral emotional impact. Nevertheless, negative impact is reported by a minority of families and possible psychosocial predictors deserving further scrutiny have been identified.
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Síntomas Afectivos/etiología , Terapia Genética/psicología , Distrofia Muscular de Duchenne/terapia , Niño , Relación Dosis-Respuesta a Droga , Salud de la Familia , Terapia Genética/métodos , Humanos , Masculino , Morfolinos/genética , Distrofia Muscular de Duchenne/genética , Distrofia Muscular de Duchenne/psicología , Oligonucleótidos/administración & dosificación , Oligonucleótidos/uso terapéutico , Padres/psicología , Escalas de Valoración Psiquiátrica , Psicometría , Estrés Psicológico/etiologíaRESUMEN
BACKGROUND: Home-based screening to identify young children at risk for neurodevelopmental impairments (NDIs) is needed to guide the targeting of child neurodevelopmental intervention services in Bangladesh. This study aimed to validate such a tool for children under age 2 years. METHODS: A Developmental Screening Questionnaire was administered to mothers of children aged 0-<2 years in an urban community. Inter-rater reliability among the interviewers, who were high school graduates, was determined. All children who were screen positive and a proportion of screen negatives were subsequently assessed for NDIs by professionals. Sensitivity and specificity were calculated by comparing screening with assessment results. RESULTS: Mean kappa coefficient of agreement among interviewers was 0.95. A total of 197 children were screened, of whom 17% screened positive. Fifty-one children, including 24 screen negatives, were assessed for NDIs. Screen-positivity was significantly different between income groups (P = 0.019), and higher in stunted children (odds ratio = 5.76, 95% confidence interval = 1.72-19.28), indicating good discriminant validity Specificity was excellent (84-100%) for all developmental domains. Sensitivity was 100% for vision and hearing; 70% for speech; and 63%, 53%, 48%, and 45% for gross motor, behaviour, fine motor and cognitive impairments, respectively. CONCLUSION: A tool for screening <2-year-old children at risk for NDIs showed high specificity; and was able to identify all children at risk for vision and hearing impairments, nearly three-fourths with speech impairments, two-thirds with gross motor impairments, and about half with behavioural, cognitive and fine motor impairments. The Developmental Screening Questionnaire tool has potential for use by frontline workers to screen large populations and to link to definitive assessment as well as intervention services.
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Discapacidades del Desarrollo/diagnóstico , Tamizaje Masivo/métodos , Examen Neurológico/normas , Bangladesh/epidemiología , Disfunción Cognitiva/diagnóstico , Discapacidades del Desarrollo/epidemiología , Femenino , Pérdida Auditiva/diagnóstico , Humanos , Lactante , Recién Nacido , Masculino , Examen Neurológico/métodos , Reproducibilidad de los Resultados , Asignación de Recursos , Trastornos del Habla/diagnóstico , Población Urbana , Trastornos de la Visión/diagnósticoRESUMEN
BACKGROUND AND AIMS: Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population. METHODS AND PROCEDURES: Systematic search identified 1097 non-duplicated, quantitative articles assessing self- and/or proxy-reported QoL in samples of adults with CP. Eighteen studies were included and data extraction was conducted for sampling characteristics, selection of informants (self- and proxy-reports), adequacy of administered measures, and examination of age-related specificities. OUTCOMES AND RESULTS: The results revealed discrepancies between conceptual definitions of QoL and their measurement approaches in CP. Most papers relied on self-reports. Most studies were cross-sectional and often based on relatively small samples; the variable of age was considered inconsistently in statistical analyses. CONCLUSIONS AND IMPLICATIONS: Future strategies to improve the validity and applicability of QoL assessments of adults with CP would include: using a clear definition of QoL aligned with the measurement employed; considering proxy-reports whenever appropriate, to encompass larger samples and a wider range of ability; and using age-stratified analyses, in order to deepen understanding of potentially modifiable variables and paths linked to QoL outcomes.
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Parálisis Cerebral/fisiopatología , Calidad de Vida , Adulto , Parálisis Cerebral/psicología , Humanos , Medición de Resultados Informados por el Paciente , Apoderado , AutoinformeRESUMEN
A special interest group (SIG) entitled "Older Adults with ASD: The Consequences of Aging" was held at the International Society for Autism Research (INSAR) annual meetings in 2016 and 2017. The SIG and subsequent meetings brought together, for the first time, international delegates who were members of the autistic community, researchers, practitioners and service providers. Based on aging autism research that is already underway in UK, Europe, Australia and North America, discussions focussed on conceptualising the parameters of aging when referring to autism, and the measures that are appropriate to use with older adults when considering diagnostic assessment, cognitive factors and quality of life in older age. Thus, the aim of this SIG was to progress the research agenda on current and future directions for autism research in the context of aging. A global issue on how to define 'aging' when referring to ASD was at the forefront of discussions. The 'aging' concept can in principle refer to all developmental transitions. However, in this paper we focus on the cognitive and physical changes that take place from mid-life onwards. Accordingly, it was agreed that aging and ASD research should focus on adults over the age of 50 years, given the high rates of co-occurring physical and mental health concerns and increased risk of premature death in some individuals. Moreover, very little is known about the cognitive change, care needs and outcomes of autistic adults beyond this age. Discussions on the topics of diagnostic and cognitive assessments, and of quality of life and well-being were explored through shared knowledge about which measures are currently being used and which background questions should be asked to obtain comprehensive and informative developmental and medical histories. Accordingly, a survey was completed by SIG delegates who were representatives of international research groups across four continents, and who are currently conducting studies with older autistic adults. Considerable overlap was identified across different research groups in measures of both autism and quality of life, which pointed to combining data and shared learnings as the logical next step. Regarding the background questions that were asked, the different research groups covered similar topics but the groups differed in the way these questions were formulated when working with autistic adults across a range of cognitive abilities. It became clear that continued input from individuals on the autism spectrum is important to ensure that questionnaires used in ongoing and future are accessible and understandable for people across the whole autistic spectrum, including those with limited verbal abilities.
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Research on sex-related differences in Autism Spectrum Disorder (ASD) has been impeded by small samples. We pooled 28 datasets from 18 sites across nine European countries to examine sex differences in the ASD phenotype on the ADI-R (376 females, 1763 males) and ADOS (233 females, 1187 males). On the ADI-R, early childhood restricted and repetitive behaviours were lower in females than males, alongside comparable levels of social interaction and communication difficulties in females and males. Current ADI-R and ADOS scores showed no sex differences for ASD severity. There were lower socio-communicative symptoms in older compared to younger individuals. This large European ASD sample adds to the literature on sex and age variations of ASD symptomatology.
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Trastorno del Espectro Autista/epidemiología , Adolescente , Adulto , Factores de Edad , Trastorno del Espectro Autista/diagnóstico , Niño , Preescolar , Femenino , Humanos , Lactante , Relaciones Interpersonales , Masculino , Fenotipo , Caracteres SexualesRESUMEN
PURPOSE: The aim of the paper is to explore the issues involved in measuring children's participation. METHOD: The concept of participation as encapsulated in the International Classification of Functioning, Disability and Health (ICF) is discussed as it applies to children. The essential components of any measure of children's participation are outlined, including participation essential for normal development and survival, leisure activities, and educational participation. Some existing instruments are briefly reviewed in terms of their coverage of the essential components and the adequacy of their approach to measurement. RESULTS: Key issues regarding the content of an adequate measure of participation include the need to consider the child's dependency on the family, and their changing abilities and autonomy as they grow older. Instruments may be most appropriate where they ask the child directly, implying use of visual as well as verbal presentation. Their focus should be on 'performance' such as whether and how often an activity is taken part in, and not incorporate degree of assistance within the measurement scaling. CONCLUSIONS: Currently available measures of children's participation all have some limitations in terms of their applicability across impairment groupings, whether the child can directly respond, and in the ICF components covered. The feasibility of developing measurement instruments of children's participation at different ages is discussed.
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Actividades Cotidianas/clasificación , Evaluación de la Discapacidad , Niños con Discapacidad/clasificación , Niño , Niños con Discapacidad/rehabilitación , Indicadores de Salud , Humanos , Medio Social , Encuestas y CuestionariosAsunto(s)
Trastornos Generalizados del Desarrollo Infantil/psicología , Protección a la Infancia , Trastornos Mentales , Salud Mental , Transición a la Atención de Adultos , Adaptación Psicológica , Adolescente , Conducta del Adolescente , Factores de Edad , Niño , Humanos , Vida Independiente , Estrés Psicológico , Factores de TiempoRESUMEN
OBJECTIVES: (1) Describe how the Autism Spectrum Database-UK (ASD-UK) was established; (2) investigate the representativeness of the first 1000 children and families who participated, compared to those who chose not to; (3) investigate the reliability of the parent-reported Autism Spectrum Disorder (ASD) diagnoses, and present evidence about the validity of diagnoses, that is, whether children recruited actually have an ASD; (4) present evidence about the representativeness of the ASD-UK children and families, by comparing their characteristics with the first 1000 children and families from the regional Database of children with ASD living in the North East (Dasl(n)e), and children and families identified from epidemiological studies. SETTING: Recruitment through a network of 50 UK child health teams and self-referral. PATIENTS: Parents/carers with a child with ASD, aged 2-16â years, completed questionnaires about ASD and some gave professionals' reports about their children. RESULTS: 1000 families registered with ASD-UK in 30â months. Children of families who participated, and of the 208 who chose not to, were found to be very similar on: gender ratio, year of birth, ASD diagnosis and social deprivation score. The reliability of parent-reported ASD diagnoses of children was very high when compared with clinical reports (over 96%); no database child without ASD was identified. A comparison of gender, ASD diagnosis, age at diagnosis, school placement, learning disability, and deprivation score of children and families from ASD-UK with 1084 children and families from Dasl(n)e, and families from population studies, showed that ASD-UK families are representative of families of children with ASD overall. CONCLUSIONS: ASD-UK includes families providing parent-reported data about their child and family, who appear to be broadly representative of UK children with ASD. Families continue to join the databases and more than 3000 families can now be contacted by researchers about UK autism research.
Asunto(s)
Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Bases de Datos Factuales/normas , Padres , Selección de Paciente , Investigación/normas , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Vigilancia de la Población , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Reino Unido/epidemiologíaRESUMEN
BACKGROUND: Recent estimates concerning the prevalence of autistic spectrum disorder are much higher than those reported 30 years ago, with at least 1 in 400 children affected. This group of children and families have important service needs. The involvement of parents in implementing intervention strategies designed to help their autistic children has long been accepted as helpful. The potential benefits are increased skills and reduced stress for parents as well as children. OBJECTIVES: The objective of this review was to determine the extent to which parent-mediated early intervention has been shown to be effective in the treatment of children aged 1 year to 6 years 11 months with autistic spectrum disorder. In particular, it aimed to assess the effectiveness of such interventions in terms of the benefits for both children and their parents. SEARCH STRATEGY: A range of psychological, educational and biomedical databases were searched. Bibliographies and reference lists of key articles were searched, field experts were contacted and key journals were hand searched. SELECTION CRITERIA: Only randomised or quasi-randomised studies were included. Study interventions had a significant focus on parent-implemented early intervention, compared to a group of children who received no treatment, a waiting list group or a different form of intervention. There was at least one objective, child related outcome measure. DATA COLLECTION AND ANALYSIS: Appraisal of the methodological quality of included studies was carried out independently by two reviewers. Differences between the included studies in terms of the type of intervention, the comparison groups used and the outcome measures were too great to allow for direct comparison. MAIN RESULTS: The results of this review are based on data from two studies. Two significant results were found to favour parent training in one study: child language and maternal knowledge of autism. In the other, intensive intervention (involving parents, but primarily delivered by professionals) was associated with better child outcomes on direct measurement than were found for parent-mediated early intervention, but no differences were found in relation to measures of parent and teacher perceptions of skills and behaviours. REVIEWER'S CONCLUSIONS: This review has little to offer in the way of implications for practice: there were only two studies, the numbers of participants included were small, and the two studies could not be compared directly to one another. In terms of research, randomised controlled trials involving large samples need to be carried out, involving both short and long-term outcome information and full economic evaluations. Research in this area is hampered by barriers to randomisation, such as availability of equivalent services.