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Logo of archdischArchives of Disease in ChildhoodVisit this articleSubmit a manuscriptReceive email alertsContact usBMJ
Arch Dis Child. 2007 April; 92(Suppl1): A6–A9.
PMCID: PMC2066108


Childhood disability

G/TUES/DIS1 Improving care for children with complex disabilities presenting to accident and emergency

N. Jones, K. Horridge. Sunderland Royal Hospital, Sunderland, Tyne and Wear, UK

Background and AimsAttendance to Accident and Emergency (A&E) with an acutely unwell child with complex disabilities can be extremely stressful for parents, carers, nurses and doctors. Our experience is that parents can find it frustrating to meet staff in A&E who are unfamiliar with managing complex disabled children. Healthcare staff also describe feeling daunted by the challenge of assessing and managing children who may not show the usual cues to illness and may require specific or unusual treatments. We have developed a care pathway, designed to integrate with individual emergency care plans (where available), which we hope will improve the management of children with complex disabilities presenting to A&E.

MethodsFollowing discussion with nursing and junior medical staff working in our A&E department, a draft care pathway was developed. This was sent to all local hospital and community based medical and nursing staff involved in looking after children with disabilities for comment. The pathway was then modified to incorporate the suggestions made and redistributed for further review.

ResultsThe second version was agreed by consensus and is now in use on our A&E department. The pathway consists of an algorithm and a “checklist”. The algorithm focuses on the steps to follow if a disabled child brought to A&E is assessed as either having an acute serious illness or a minor illness/injury. For acute serious illness, the algorithm highlights the importance of using a child's individual emergency care plan if available, involving consultant as soon as possible and thinking early about what level of input is appropriate. The “checklist” highlights key points to remember when assessing a disabled child—for example, occult sources of pain (teeth, ears, spine, hips). It also gives clear instruction about who should be informed when a disabled child has attended A&E.

ConclusionChildren with complex disabilities present a challenge to healthcare staff when attending A&E. We have designed a tool which gives clear guidance on the steps to be followed in acute severe illness and about common pitfalls to avoid in less severe presentations. We hope this will allow smoother assessment and management of disabled children in A&E and improve communication between professionals and families.

G/TUES/DIS2 An audit of developmental outcome of preterm babies (less than 31 weeks gestation) in a district general hospital

D. Sobithadevi, A. Manzoor, M. Ahmed. Department of Paediatrics, Queen's Hospital, Burton on Trent, UK

IntroductionThe survival of preterm babies is improving as a result of better perinatal care. Developmental outcomes assume an important role in counselling the parents about survival rate and disability in these babies. The aim of this audit is to verify if the local guidelines are being followed and if the outcomes are similar to published data.

MethodsThis is a retrospective audit of all preterm babies less than 31 weeks gestation born between January 1999 and October 2004 in Queen's Hospital, Burton. A total of 104 babies were included. Developmental assessment was performed on these babies using the “schedule of growing skills 2”.

ResultsSeventy six out of 104 children underwent developmental assessment out of which 17% were less than 27 weeks, 55% were 27−29 weeks and 27% were 30–31 weeks of gestational age. Developmental outcomes at 2 years of age were as shown in the table. The criteria used to define the disability in our audit were similar to the EPICure study.

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Abstract G/TUES/DIS2

ConclusionThe data from this audit suggest that local guidelines regarding developmental assessment were followed in majority (73%) of our preterm babies and developmental outcomes were comparable to other studies such as EPICure, Leiden follow‐up project for prematurity and Finland study.

Woodet alNEJM2000343 pp 378-84 M Rijkenet alPediatrics2003112 pp 351-8 Tommiskaet alArch Dis Child200388 pp 29-35

G/TUES/DIS3 A randomised controlled trial of hyperalimentation to improve head growth in the extreme preterms: developmental outcome in the first year

M. J. Tan, R. W. I. Cooke. School of Reproductive and Developmental Medicine, University of Liverpool, Liverpool, UK

AimTo explore the relationships between early nutrition, postnatal head growth and developmental outcome in the first year among infants born before 29 weeks gestation.

MethodA randomised controlled study of hyperalimentation was conducted in a tertiary neonatal intensive care unit. 142 infants who were born before 29 weeks gestation were recruited from January 2004 to January 2006. Infants were randomly assigned to receive enhanced parenteral and enteral nutrition (Group A) or standard parenteral and enteral nutrition (Group B) from the first week of life to 34 weeks postmenstrual age (PMA). Actual daily intake was recorded for each infant. Energy and protein balances are estimated by subtracting actual cumulative intakes from recommended intakes (120 kcal/kg/day and 3 g/kg/day). Weekly occipito‐frontal circumferences (OFC) were measured from birth until 36 weeks' PMA. Developmental assessment using Bayley Scales of Infant Development II (BSID II) was carried out at 3 and 9 months post‐term.

Results114 infants survived to 36 weeks PMA. 81 infants were seen at 3 months post‐term and 60 infants to date have been seen at 9 months post term. Babies in Group A had lower gestation (12 v 7 below 25 weeks) and birth weight compared to those in Group B (median 930 g v 980 g). Only 10 babies (22.2%) in Group A and 3 (6.4%) in Group B were in positive cumulative energy balance at 28 days of age (p = 0.087). Mental development index (MDI) and psychomotor development index (PDI) were not significantly different between the 2 groups. However, PDI at 3 months correlated significantly with energy balance at 28 days of age (r = 0.34, p = 0.003). OFC at 36 weeks correlated significantly with MDI (r = 0.27, p = 0.007) and PDI (r = 0.305 p = 0.003) at 3 months post‐term.

ConclusionThe delivery of adequate nutrition remains a challenge in extremely preterm infants. Nutritional deficit is associated with poorer developmental outcome in the first year of life. Further studies are required to evaluate the role of hyperalimentation in reducing nutritional deficit and improving long‐term outcome of these infants.

G/TUES/DIS4 Radiological screening for hip disease in children with bilateral cerebral palsy

P. Thuse, V. Rao. Walsall PCT, Walsall, UK

AimTo audit screening for hip dislocation and related problems in children with bilateral cerebral palsy.

BackgroundHip displacement occurs in 75% of children with bilateral cerebral palsy (CP). It is difficult to detect early hip problems in CP by physical examination alone. Radiological detection at 30 months and treatment reduces the need for later surgery.

MethodsRetrospective study of case notes and x ray reports of all known children with spastic quadriplegia or diplegia aged from 0–18 years, in a health district.

ResultsThere were 33 cases, aged 2 to 17 years, 21 boys. 21 (64%) prem. 12 (36%) from ethnic minority, 4 (12%) had an x ray before 30 months, 6 (17%) before and 3 after age 5.11 (33%) had not been x rayed at all. Hip examination was documented in 18 (54%) and the hip abduction angle in 5 (15%). Eight children (24%) had surgery. Non‐surgical correction done in 1 child.

ConclusionsOur audit showed that practice relating to detection of hip problems met the recommended standard in 12%. This led to the development of joint protocol with orthopaedic surgeons. Documentation of clinical details, filing of correspondence and x ray reports and has been improved.

G/TUES/DIS5 The incidence and distribution of fractures in children with cerebral palsy

L. Simpson, L. Cresswell, P. Jackson. Child Health Department, University of Edinburgh, Edinburgh, UK

IntroductionCerebral palsy is associated with reduced mobility and poor nutrition resulting in decreased bone strength. It is postulated that this will confer a higher risk of fractures. The aim of this study is to identify the incidence and distribution of fractures in children with cerebral palsy compared to the general population.

MethodsThe Support Needs database was used to identify all patients aged 0–16 years with cerebral palsy living in the city. They were grouped according to the distribution of their cerebral palsy: diplegia, hemiplegia, mixed diplegia and hemiplegia, and quadriplegia. Each patient's A&E file on the hospital computer system was then searched for the number and site of fractures sustained over the previous 9 years. The annual incidence of fractures was calculated for each group and compared to the overall incidence of fractures in the general paediatric population in the city using data from a recent study. Analysis of fracture distribution was also performed.

Results194 eligible patients were identified, corresponding to 1458 patient‐years worth of A&E data. The distribution of cerebral palsy was documented in 125 patients, relating to 956 patient years. The total number of fractures was 52 over the 1458 patient years giving an annual incidence of 36 per 1000, compared to 21 per 1000 in the general population. The most common fracture site in patients with cerebral palsy is the lower limb compared to the upper limb in the general population.

ConclusionsChildren with cerebral palsy are 1.7 times more likely to suffer a fracture and the distribution of fractures is different to that in the general paediatric population. Consideration should be given to screening and treatment of low bone mineral density in this patient group to prevent fractures.

G/TUES/DIS6 Child brain injury research programme: preliminary data on predictive validity of the Health Utilities Index in children with acquired brain injury

K. Vella, A. Campbell, N. Lincoln, W. Whitehouse, D. Walker, J. Williams, K. Morgan. University of Nottingham, Nottingham, Nottinghamshire, UK

AimsThis study aimed to determine the predictive validity of a recently developed health‐related quality of life measure, the Health Utilities Index Mark 3 (HUI‐3) in intelligence, memory and behavioural outcomes in a population of children who have suffered an ABI.

MethodsThis study considered a subset of data from a longitudinal prospective design looking at recovery of neuropsychological function after childhood ABI. 36 children who had been recruited to the study were assessed at various stages between admission to hospital and 12 months post‐injury. The outcome measures were the Conners' Parents and Teachers Rating Scales‐Revised (CPRS‐R‐R, CTRS‐R), the Children's Memory Scale (CMS), the Wechsler Intelligence Scale for Children Version III (WISC‐III) and the Strengths and Difficulties Questionnaire (Parents and Teachers) (SDQ). The HUI‐3 as measured at baseline and 3 months was correlated with these outcome measures, as well as more traditional demographic measures to determine whether there were any significant associations between the HUI measurements and outcome.

ResultsCorrelations between the HUI‐3 both at baseline and at 3 months were significant with some subsets of the CMS, WISC‐III and the SADQ. However, there were only limited correlations with behavioural measures, as measured on the CPRS‐R‐R and CTRS‐R. Baseline characteristics such as age at injury, severity of injury, diagnosis and family composition were also found to be significant and this may have been the mediating effect for the associations found with the HUI.

ConclusionMeasures of intelligence, memory and some limited measures of behaviour are related to the HUI‐3 which suggests that there might be some role for the use of the HUI in predicting outcome. However, the sample size was small and there were some significant ceiling effects which may have distorted the data. Future research should focus on obtaining a larger and more representative sample to ensure both internal and external validity.

G/TUES/DIS7 Cognitive functioning over the first year after diagnosis in children treated for brain tumours in comparison with matched normal controls

R. Shortman1, R. McCarter1, A. Penn3, S. Lowis2, M. Stevens2, P. Sharples1. 1Frenchay Hospital, Bristol, UK; 2Bristol Royal Hospital for Children, Bristol, UK; 3University of the Witwatersrand, JHB, South Africa

IntroductionBrain tumours are the second most common childhood malignancy. There is evidence that cognitive function is reduced in long‐term brain tumour survivors, but little information exists concerning outcomes during the first year of treatment.

AimTo define cognitive function in children with brain tumours at 1, 6 and 12 months post‐diagnosis.

MethodsLongitudinal prospective study of children with brain tumours admitted to the Regional Neuroscience Centre compared with normal matched controls. Intellectual outcome (Verbal IQ, VIQ) (Performance IQ, PIQ) was assessed using age appropriate forms of the Wechsler Intelligence Scales. Memory was assessed using the Children's Memory Scales (CMS). Attention was assessed using the Test of Everyday Attention for Children (TEA‐Ch). Analysis was by mixed ANOVA.

ResultsTwenty six tumour patients and 26 matched controls have been studied. The mean age was 10.6 years, range 3.8–16.7 years. 50% were boys, 50% girls. There were significant main effects of group (patients v controls) with respect to VIQ; PIQ; processing speed; verbal and visual memory in both immediate and delayed conditions; and a measure of selective attention (all measures, p<0.01) but not with respect to other attentional measures. There were significant main effects of time for measures of PIQ; verbal and visual memory, processing speed; selective and sustained attention; and attentional switching and control (all measures, p<0.01), with improvement in these tasks over time. Brain tumour patients' VIQ scores improved between 1 and 6 months but fell at 12 months, whereas controls' VIQ scores rose across the three time points.

ConclusionChildren with brain tumours show significant impairments in intellect, memory and attention early after diagnosis. While VIQ appears to deteriorate over time, other cognitive functions improve over 12 months. Differences between patients and controls remain at one year for most measures.

G/TUES/DIS8 Transitions, the unmet need and underdeveloped service, for children with complex developmental and health needs

S. Puri1, M. Clarke1, L. Yee2. 1Leeds Teaching Hospital Trust, Leeds, UK; 2Leeds PCT, Leeds, UK

BackgroundTransition from paediatric to adult services for young people with complex disabilities is fraught with anxieties; holistic care routinely provided by “community paediatricians” is abandoned for a model of health centred on independence and self‐reliance of adulthood. It is a statutory requirement in education to undertake a transition review on all pupils with a statement of special educational needs. It is not mandatory for health services to be involved in this process, but good practice.

AimTo map the current health service provision for transition of young people with complex developmental and health needs.

MethodA postal questionnaire survey was undertaken amongst the paediatricians in the West Yorkshire region. Followed by a review of 30 community case notes of 14+ pupils, identified by Education Leeds, as having a statement of special educational needs.

ResultA wide variation in transition planning and provision with lack of awareness regarding the processes for transition planning, lack of agreed protocols and no guidelines regarding across agency working and responsibilities was found. The case note reviews showed complete lack of evidence of health contribution towards the transition process, the results are therefore not tabulated.

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DiscussionThere is evidence of increasing numbers of children with complex disabilities surviving into adulthood. The benefits of a coordinated and smooth transition to maintain adequate care for these young people has been shown in a study with young people with physical difficulties (Chamberlain, 1993; Stevenson et al, 1997). It is an important responsibility of paediatricians to ensure the smooth transition at all levels to adult services. This can best be achieved by standardised needs assessment, written care plans and clarity regarding professional responsibility.

G/TUES/DIS9 Assessment for autistic spectrum disorder using 3Di

S. Banerjee, G. Popli, S. Venables. East Kent Hospitals NHS Trust, Canterbury, Kent, UK

BackgroundAutism spectrum disorders (ASD) affect up to 1% of children. Many children failing to progress in school have ASD; who have normal intelligence but require special educational provision. The currently used diagnostic interviews are, the Autism Diagnostic Interview Diagnostic Interview for Social Communication Disorders and Autism Diagnostic Observation Schedule. Recently a computer‐based diagnostic programme has been devised: The Developmental, Dimensional and Diagnostic Interview (3Di) at Institute of Child Health London as a tool for assessing such children. 3Di shortens the stage 1 and stage 2‐assessment period as suggested in the National Autism Plan for Children (NAPC).

AimTo evaluate service provision in Thanet using 3Di compared to NAPC recommendations.

MethodsAudit of the notes of children, assessed by 3Di over one year from 15 November 2005 to 14 November 2006. Children diagnosed by any other method or diagnosed out of Thanet by 3Di were excluded.

ResultsA total of 35 children were assessed. There were 31 (88.57%) boys and 4 (11.43%) girls. The age ranged from 5 years and 5 months to 13 years and 9 months All 35 children were attending mainstream school. The mean age of the child when concerns were first raised was 3½ years. The mean age for a referral was 8 years 1 month and the mean age of diagnosis was 9 years. Out of 35, 22 (62.86%) children were referred for an assessment within 6 weeks or less. 25 children were found to have ASD and 17 children had an assessment with a final report within 30 weeks. In 8 children ASD was suspected but the final report was still awaited because of specialist assessment report from speech therapist. A trend in reduced waiting time for assessment was noticed during the audit period (16 weeks v 10 weeks).

ConclusionThe audit showed 3Di an efficient tool for assessment. It can reduce the waiting time for assessment. We could improve in early identification following parental concern and completing assessment within 30 weeks.

National Initiative for Autism: Screening & Assessment. National Autism Plan for Children 2003

G/TUES/DIS10 Development of a tool to assess the impact of drooling on quality of life

J. Leonard, H. Kubba. Royal Hospital for Sick Children, Glasgow, UK

AimsIn children with neurodisability (cerebral palsy in particular) drooling can be a persistent and severe problem. Although drooling may appear trivial, it has a disproportionately large impact on the child, carers and family, affecting quality of life. There is a need for outcome measures to be developed in order to better assess the disease burden and compare the variety of treatments that are available. A disease‐specific quality of life measure is a more sensitive measure allowing you to focus on the particular condition. There is no measure in existence to assess the impact of the drooling on the child and family in the quality of life domain. We are aiming to develop such a tool.

MethodsItems for inclusion in the questionnaire were generated by: a comprehensive literature search on drooling in children with neurodisability; semistructured interviews with 8 families of children seen in the salivary control clinic to elicit problems and difficulties perceived by them to be associated with drooling; professional perception of difficulties elicited from several professionals with an interest in this field (Community Paediatrician, Paediatric Neurologist, Paediatric ENT Surgeon). Established QOL scores were studied for useful questions, namely HUI II and III, CHQ PF50, TACQOL and TAPQOL. A draft questionnaire was drawn up based on questions generated from the above. This draft questionnaire was piloted on a group of families of 6 children in the salivary control clinic. They were asked to comment on the readability, ease of completion and minor changes were made to the wording of some questions to make them less ambiguous. Parents felt that the questionnaire was easy to complete, on average taking 5 minutes. We have recruited 40 patients to date from our saliva control clinic, and the questionnaire is going through the validation phase.

Results and ConclusionWe shall present our results to date, and the difficulties encountered.

G/TUES/DIS11 The development of children with Down's syndrome

P. Henshall. Cheshire

AimsOne of the most commonly asked questions by the parents of a child with Down's syndrome (DS) is “how is he developing compared with other children with DS?” At present the only comparison available is with a typically developing child. The Griffiths Mental Developmental Scales (GMDS) were used to present a General Quotient (GQ) reference standard to allow a child with DS to be compared with other children with DS.

MethodsThe study sample was drawn from UK specialist developmental clinics and all children were tested by the author, a colleague or specialist registrars under supervision. The GMDS were performed on 284 children with DS and the mental age and GQ were calculated. Centile charts were constructed from 339 test results. Charts were produced in two forms: one with only 0.4th and 99.6th centiles and one with 3rd, 10th, 25th, 50th, 75th, 90th and 97th centiles.

ResultsThe charts show a wide variation in ability of children with DS. The GQ decreases with increasing chronological age from a mean of 83 at age 1 year to a mean of 50 at 7 years. This decrease appears to plateau at about 9 years of age.

ConclusionThese charts allow parents to see how their child is progressing compared to the expected development of a child with DS. They have been well received by parents and provide a helpful way to explain test results. The plateau at age 9 may be an artefact caused by approaching the limits of the test at a mental age of 8 years.

G/TUES/DIS12 A review of the causes of hospitalisation in children with Trisomy 21

P. Cifelli, R. Appleyard, C. Ashcroft, K. Neal, E. Marder. Nottingham University Hospitals NHS Trust, Nottingham, UK

AimTo determine the nature and frequency of hospital admissions in children with Trisomy 21.

MethodA clinical chart review was performed of all admissions of children with Trisomy 21 to the local hospital trust over a six year period (1/1/2000 to 31/12/2005). The study included all 100 patients known to the local Down's syndrome service aged under 12 at 31/12/2005 and resident locally for the six‐year study period. Medical notes for all admissions were reviewed and the data confirmed with electronic coding information. Variables evaluated included: (1) primary reason for admission, (2) length of admission, (3) admission to ICU, (4) concomitant congenital heart disease (CHD) and (5) cause of death.

ResultsThere were 309 admissions. 81% of Trisomy 21 patients were admitted at least once. Mean and median number of admissions was 3 (range 0–20). The most frequent diagnoses, excluding elective surgery and routine procedures are listed in the table. For each diagnosis the size of the subgroup with CHD and their number of admissions is indicated. 27.6% hospital days were on ICU. 8/100 patients died over the study period. 34% had CHD accounting for 67% of hospital days and 87% ICU days.

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ConclusionChildren with Down's syndrome were commonly admitted to hospital with acute illness, particularly respiratory tract infection. This was true for those with and without congenital heart disease. Admissions were longer, and more likely to include admission to intensive care for those with congenital heart disease. Further studies are needed in order to see how this compares with the general population and to evaluate whether different protocols for management of respiratory illness in this group are indicated.

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