Opinion statement on the minimal acceptable standards of healthcare in cerebral palsy.

PURPOSE: Recent studies have shown a marked variation in the standards of healthcare for young people with disabilities in different regions of the UK and even within the same health district. Equity in the provision of healthcare is a fundamental principle of the NHS. However, this can only be measured against an agreed minimal standard of healthcare that serves as a benchmark for healthcare purchasers and providers. The aim of the present document is to develop a set of minimum standards of healthcare for children and adults with cerebral palsy (CP). METHODS: The document was developed in two stages by a multi-professional and multi-disciplinary group of practitioners in the field of CP. Initially, members of the panel jointly formulated a statement of what they believed should be the minimal acceptable standards of healthcare in CP drawing on their own experience and the published scientific evidence. In the second stage the views of some of the relevant professional bodies and voluntary organizations on the draft statement were sought. The responses of these organizations were incorporated into the final document if agreed by the panel. RESULTS AND CONCLUSIONS: Twenty-two recommendations were made. These were considered the minimum standards of care in a district general hospital. The emphasis was on the organisation and delivery of healthcare for children with CP. The statement is intended to stimulate debate especially in relation to the equity of service provision throughout the country and may be used to inform purchasers of healthcare. Similarly, it may also be useful to providers of healthcare as an audit tool.

Peer problems of 9- to 11-year-old children with hemiplegia in mainstream schools. Can these be predicted?

Is it possible to predict relatively early in the life of children with disabilities those who are likely to develop peer problems if they get no extra help? This question is examined in our prospective study of a representative sample of children with hemiplegia attending mainstream schools. Hemiplegia is a particularly suitable model for studying integration as it is a relatively homogeneous condition that does not usually preclude mainstream placement. Our aim was to investigate whether the excess of peer problems could be predicted from information obtained some 4 years earlier. A representative sample of 55 children with hemiplegia in mainstream education was followed prospectively from a mean age of 7.1 years (Time 1) to a mean age of 10.7 years (Time 2). Using standardized measures of peer rejection, lack of friends, and victimization, two-thirds of the sample had at least one of these problems at Time 2. A greater number of peer problems was primarily predicted by two Time-1 variables: lower IQ and more teacher-reported externalizing problems (disruptiveness and hyperactivity). A risk index based on these two variables identified a high-risk subgroup that might particularly have benefited from early intervention to reduce behavioural problems, and nurture social skills. As more children with special needs are integrated into mainstream schools, it is increasingly important to remember that supporting these children requires appropriate provision to foster their social as well as their academic and physical development.

Peer problems of children with hemiplegia in mainstream primary schools.

A representative sample of 55 mainstreamed 9-10-year-olds with hemiplegia were compared with all classmates on sociometric measures of popularity and friendship, and with 55 matched controls on measures of victimization. Children with hemiplegia were more rejected and less popular, had fewer friends, and were more often victimized; they were not more likely to be bullies themselves. These differences were not fully accounted for by group differences in teacher-estimated IQ and behaviour. Possible explanations range from neurologically determined deficits in mentalizing skills to peer prejudices about children with disabilities. The development of appropriate intervention strategies should be a high priority, particularly since peer problems not only result in current distress but also predict psychosocial problems in the future.

The prevalence and correlates of specific learning difficulties in a representative sample of children with hemiplegia.

BACKGROUND: Children with hemiplegia have cerebral palsy affecting one side of the body due to damage to the opposite side of the brain. An investigation of the association between hemiplegia and specific learning difficulties (SpLD) provides a unique window on body-mind links and left brain/right brain differences. AIMS: The present study investigated the prevalence and correlates of SpLDs in children with hemiplegia. SAMPLE: A representative sample of 149 London children with hemiplegia aged between 6 and 10 included 59 children whose cognitive abilities and predicted academic ability were within the average range. METHODS: SpLDs were defined by ability-achievement discrepancy analysis. Differences between children with and without SpLDs were explored with a between-groups design. RESULTS: Children with hemiplegia had significantly more SpLDs than expected, with 36 per cent of these children having at least one SpLD. Children with and without SpLDs were similar in intelligence and demographic background, but the children with SpLDs had significantly more severe neurological impairments and a significantly higher rate of emotional and behavioural difficulties (EBDs) than comparison children. CONCLUSIONS: Three typical case studies are described and recommendations made for the early identification and remediation of SpLDs in children with hemiplegia.

Do unilateral lesions of the developing brain have side-specific psychiatric consequences in childhood?

This study used a large epidemiological sample of children with lateralised brain lesions to establish whether damage to the developing human brain has side-specific psychiatric consequences. Parents and teachers completed behaviour questionnaires on 429 hemiplegic children and teenagers, with a subsample of 149 hemiplegic children also being assessed by parent and child interviews. Although childhood hemiplegia was accompanied by a high rate of psychopathology, children with right- and left-sided hemiplegias did not differ significantly on any dimensional or categorical measure of psychopathology. This absence of laterality effects, perhaps reflecting the developing brain's neuroplasticity, casts doubt on theories linking particular types of child or adult psychopathology to side-specific damage to the developing brain.

IQ and its predictors in childhood hemiplegia.

In a population-based sample of 149 children with hemiplegia, IQ was highly correlated with a simple-to-calculate index of neurological severity. Performance IQ was an average of 13 points lower then verbal IQ-a difference that seemed to reflect specific visuospatial difficulties rather than an effect of the motor disability itself. Side of lesion was not significantly related to either IQ or verbal-performance discrepancy. Neurological factors and social class had additive effects on IQ, suggesting that neurological damage neither amplified nor obliterated the impact of ordinary psychosocial and genetic factors on IQ.

Rating child psychiatric caseness from detailed case histories.

Novel operationalized criteria were used to rate detailed psychiatric case histories on 151 schoolchildren with hemiplegia. Ratings of psychiatric caseness or non-caseness were reliable and valid; the method may be widely applicable. Caseness was defined both narrowly (in terms of social incapacity for the child) and broadly (in terms of disruption to others and distress too). Both definitions could be applied reliably to children of normal intelligence but broadly defined caseness was more reliable for children with low intelligence. Barely half of the psychiatric cases met operationalized criteria for one or more DSM-IV or ICD-10 diagnosis. The others mostly had partial or mixed syndromes that could, with clinical judgement, be assigned to "not otherwise specified' diagnoses. Even with clinical judgement, however, a substantial minority of children with low intelligence had clinically significant but undiagnosable abnormalities in social relatedness.

Do incomplete ascertainment and recruitment matter? - a study in childhood hemiplegia.

London children with hemiplegia were ascertained from multiple sources . The effectiveness of ascertainment varied markedly between different sectors of London, and many families did not respond to a written appeal to participate in the research (though most did respond to a personal appeal). Subjects from areas with high and low ascertainment rates had very similar demographic, medical, cognitive and behavioral variables, and so did easy- and hard-to-recruit subjects. The characteristics of the sample as a whole closely resembled those of previous epidemiological samples of hemiplegic children. It would be rash to assume that incomplete ascertainment and recruitment are innocuous, even though they did not make this sample unrepresentative.