Pain in children with cerebral palsy: a cross-sectional multicentre European study.

AIM: To determine the prevalence and associations of self-reported and parent-reported pain in children with cerebral palsy (CP) of all severities. METHOD: Cross-sectional design using a questionnaire; analysis using ordinal regression. Children aged 8-12 years were randomly selected from population-based registers of children with CP in eight European regions; a further region recruited 75 children from multiple sources. Outcome measures were pain in the previous week among children who could self-report and parents' perception of their child's pain in the previous 4 weeks. RESULTS: Data on pain were available from 490 children who could self-report and parents of 806 children (those who could and could not self-report). The estimated population prevalence of self-reported pain in the previous week was 60% (95% CI: 54-65%) and that of parent-reported pain in the previous 4 weeks was 73% (95% CI: 69-76%). In self-reporting children, older children reported more pain but pain was not significantly associated with severity of impairment. In parent reports, severity of child impairment, seizures and parental unemployment were associated with more frequent and severe pain. CONCLUSION: Pain in children with CP is common. Clinicians should enquire about pain and consider appropriate physical, therapeutic or psychological management.

Participation of disabled children: how should it be characterised and measured?

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.

Development and validation of a tool to measure the impact of childhood disabilities on the lives of children and their families.

OBJECTIVE: Information on registers of children with special needs will be more meaningful if a validated measure of the severity of impact of a child's disability on life and family is included. DESIGN: We describe the development and initial validation of a parent-completed questionnaire (Generic Lifestyle Assessment Questionnaire LAQ-G) aimed at measuring such impact. RESULTS: Data were collected on 95 case children, representing various disabilities, and 65 control children without disability, and analysed for case-control, test-re-test and inter-reporter reliability. Multidimensional scaling techniques were then used to derive six domains, representing impact of disability in a structure analogous to the participation domains of the revised International Classification ICF (WHO 2001). CONCLUSIONS: Initial results suggest that the LAQ-G is a reliable measure of the impact of disability for children with a range of common disabling conditions.

Analysis by gestational age of cerebral palsy in singleton births in north-east England 1970-94.

We report from a well-established cerebral palsy (CP) register the changes in CP rates by gestational age for singleton births over a 25-year period in north-east England. The gestational ages of numerators and denominators are of high accuracy back to 1970 because academic units in paediatrics and obstetrics were studying the assessment of gestational age in individual infants, and the distribution of gestational age across all births in the north-east from the 1960s. The rate of CP rose between 1970-75 and 1990-94 from 1.6 to 2.3 per 1000 singleton neonatal survivors, a rise of 0.7/1000 [95% CI 0.2, 1.3]. There was little change in the rate of CP in term infants whereas in preterm infants (<37 weeks) it rose from 5.5 to 16.8, a rise of 11.3/1000 [95% CI 5.9, 16.8]. Rises occurred in the three preterm gestational age bands <28, 28-31, 32-36 weeks with the most marked rise in those <28 weeks from 0 to 112.7. The proportion of all cases of CP arising in the preterm group rose from 19% to 45%; and the proportion of the severest cases arising in the preterm group rose from 8% to 55%. In those born after 32 weeks, there is a preponderance of small-for-gestation infants, with 10% more than two standard deviations below the mean. All types of CP are more common in infants below average weight for gestation and this is most marked for the non-spastic types that are almost only seen in term, small-for-gestation infants. Gestational age is the crucial determinant of rate of CP and the increase in prevalence seen over the past 25 years is due to increased rates in preterm infants, not term infants. Both conclusions, suspected from birthweight analyses, are now demonstrated conclusively, with the contribution coming from those 32-36 weeks gestation as well as very preterm infants.

How dangerous is food allergy in childhood? The incidence of severe and fatal allergic reactions across the UK and Ireland.

AIMS: To discover the incidence of fatal and severe allergic reactions to food in a large population of children. METHODS: A retrospective search for fatalities in children 0-15 years from 1990 to February 1998, primarily of death certification at offices of national statistics. A prospective survey of fatal and severe reactions from March 1998 to February 2000, primarily through the British Paediatric Surveillance Unit. MAIN OUTCOME MEASURES: were deaths and severe reactions. A case was deemed severe if one or more of the following criteria was met: cardiorespiratory arrest; need for inotropic support; fluid bolus >20 ml/kg; more than one dose of epinephrine; more than one dose of nebulised bronchodilator. A case was deemed near fatal if intubation was necessary. RESULTS: The UK under 16 population is 13 million. Over the past 10 years, eight children died (incidence of 0.006 deaths per 100 000 children 0-15 years per year). Milk caused four of the deaths. No child under 13 died from peanut allergy. Two children died despite receiving early epinephrine before admission to hospital; one child with a mild food allergic reaction died from epinephrine overdose. Over the past two years, there were six near fatal reactions (none caused by peanut) and 49 severe ones (10 caused by peanut), yielding incidences of 0.02 and 0.19 per 100 000 children 0-15 years per year respectively. Coexisting asthma is more strongly associated with a severe reaction than the severity of previous reactions. CONCLUSIONS: If 5% of the child population have food allergy, the risk that a food allergic child will die from a food allergic reaction is about 1 in 800 000 per year. The food allergic child with asthma may be at higher risk. Prescribing an epinephrine autoinjector requires a careful balance of advantages and disadvantages.

Health of children considered for adoption.

Children in the 'care' system are known to have poor health. Although health services can respond to and deal with health problems, it is parents, foster parents and social workers who recognize problems, seek advice and keep follow-up appointments. Many health needs remain unmet in such children. This short paper from a deprived area in north-east England shows that once a decision is made to proceed to adoption, the stable and consistent care that can then be provided meets the increased health needs that such children have.

Effect of severity of disability on survival in north east England cerebral palsy cohort.

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of 1960-1990 births in Northumberland, Newcastle, and North Tyneside health districts. Survival and cause of death were analysed in relation to data on birth, disabilities, and a unique measure of the impact of disability. RESULTS: Disability strongly influences survival. More than a third of those with a severe disability die before age 30. Fewer than a third of deaths are attributed to cerebral palsy on death certificates. Of those with severe cognitive disability, 63% live to age 35 (58% with severe ambulatory disability and 53% with severe manual disability), whereas at least 98% without severe disabilities live to age 35. The Lifestyle Assessment Score (LAS) allows a finer categorisation of impact of disability, and is strongly associated with survival: a ten point increase in LAS is associated with a doubling of the hazard rate. People who had LAS of at least 70, and had survived to age 5 have a 39% chance of dying before age 35. CONCLUSIONS: The majority of people with cerebral palsy attain adulthood. There appears to be more variation in survival rates associated with severe disability between regions of England, than between north east England, British Columbia, and California. Instantaneous risks of dying vary widely between England and California. This variation is not obviously attributable to differing rates of severe disability.

Increasing rates of cerebral palsy across the severity spectrum in north-east England 1964-1993. The North of England Collaborative Cerebral Palsy Survey.

OBJECTIVES: To report epidemiological trends in cerebral palsy including analyses by severity. DESIGN: Descriptive longitudinal study in north-east England. Every child with suspected cerebral palsy was examined by a developmental paediatrician to confirm the diagnosis. Severity of impact of disability was derived from a parent completed questionnaire already developed and validated for this purpose. SUBJECTS: All children with cerebral palsy, not associated with any known postneonatal insult, born 1964-1993 to mothers resident at the time of birth in the study area. MAIN OUTCOME MEASURES: Cerebral palsy rates by year, birth weight, and severity. Severity of 30% and above defines the more reliably ascertained cases; children who died before assessment at around 6 years of age are included in the most severe group (70% and above). RESULTS: 584 cases of cerebral palsy were ascertained, yielding a rate that rose from 1.68 per 1000 neonatal survivors during 1964-1968 to 2.45 during 1989-1993 (rise = 0.77; 95% confidence interval 0.2-1.3). For the more reliably ascertained cases there was a twofold increase in rate from 0.98 to 1.96 (rise = 0.98; 95% confidence interval 0.5-1.4). By birth weight, increases in rates were from 29.8 to 74.2 per 1000 neonatal survivors < 1500 g and from 3.9 to 11.5 for those 1500-2499 g. Newborns < 2500 g now contribute one half of all cases of cerebral palsy and just over half of the most severe cases, whereas in the first decade of this study they contributed one third of all cases and only one sixth of the most severe (chi(2) and chi(2) for trend p < 0.001). CONCLUSIONS: The rate of cerebral palsy has risen in spite of falling perinatal and neonatal mortality rates, a rise that is even more pronounced when the mildest and least reliably ascertained are excluded. The effect of modern care seems to be that many babies < 2500 g who would have died in the perinatal period now survive with severe cerebral palsy. A global measure of severity should be included in registers of cerebral palsy to determine a minimum threshold for international comparisons of rates, and to monitor changes in the distribution of severity.

Preschool vision screening.

Although a good case for preschool screening for vision defects can be made there is very little evidence that existing programmes are effective in practice. A comparative trial of three different methods of preschool vision screening is described. Some 7000 children initially aged 5 months (younger cohorts) and 30 months (older cohorts) in three matched areas entered the trial during 1987. During 18 months of follow up new visual and ocular defects among these children were ascertained through ophthalmology outpatients and from optician records. Screening at 35 months by an orthoptist based in the community is superior to conventional health visitor surveillance at 30 months and to an agreed programme of primary care screening for squint at 30-36 months as judged by screening sensitivity (100% v 50% v 50%) and the incidence of treated target conditions (17 v 3 v 5 per 1000 person years). A notable feature in the area served by the orthoptist is that 13 children received treatment for straight eyed visual acuity loss from among 1000 children whereas there were no such cases among 2500 in the comparison areas. In the younger cohorts (that is, screening at age 5-9 months) all three programmes showed equally poor results, only one of the eight treated target conditions arising from all 3500 younger children being screen detected.

Health surveillance of preschool children: four years' experience.

OBJECTIVES: To monitor the implementation of a programme of health surveillance for preschool children and measure its effect on child health. DESIGN: Regular reporting to primary care teams of their own performance, and determining the overall effect of the programme on children in the district. SETTING: All practices in Northumberland health district. SUBJECTS: All children of preschool age in Northumberland (3600 births each year). MAIN OUTCOME MEASURES: Proportion of eligible children immunised and screened for abnormalities. Age at diagnosis of congenital deafness, cerebral palsy, and special educational needs. RESULTS: Over 90% of eligible children were covered by the health surveillance scheme. Child health improved over the four years after the scheme was implemented. Uptake of immunisation against measles rose from 68% to 93% of eligible children, and the average age at which congenital deafness was diagnosed fell to 9 months. CONCLUSIONS: Maintaining the effectiveness of a surveillance programme and reporting this back to primary health care teams are processes which themselves improve health.

Training programme for senior registrars in community paediatrics.

Consultant paediatricians with a special interest in community child health are being appointed in many parts of the United Kingdom but there are few training posts or programmes for this specialty. A training programme for senior registrars in the northern region that three doctors have completed and in which six doctors are currently engaged is presented.

Selective medical examinations on starting school.

Selective medical examination of children starting school has been operated in Cramlington for five years, and the data for the school year 1984-85 are reported. It is argued that the 'routine medical' is an outdated concept and that its abolition would allow more time for more important aspects of educational medicine including help for adolescents, disabled children in school, and deprived children who have not received basic health surveillance.

Health surveillance of preschool children.

Discussions with every general practice, health visitor, and clinical medical officer in Northumberland Health Authority led to agreement about the content of preschool health surveillance, the ages at which it should be done, and referral pathways after a failed screening test. Each primary health care team now undertakes to do a basic minimum set of screening tests, and each team decides who in the team will do each test. The screening system agreed on should enable time to become available for the equally important aspects of surveillance--namely, developmental guidance, health education, and assessment and follow up of problems. The discussions also led to agreement about how the health authority should evaluate the effect of the surveillance programme on the health of children.

Severe campylobacter infection in children.

Children suffering from Campylobacter jejuni infection and who were admitted to children's hospitals in Bristol and Newcastle over a period of 2 years are reviewed. Gastro-intestinal disease caused by C. jejuni was as common as that due to Salmonella spp. Three neonates suffered particularly severe infections which resembled necrotising enterocolitis. One such case is described.