4Child - Monitoring rates of cerebral palsy, particularly in high risk subgroups

Summary

This was a long-term programme of work arising from 4Child - Four counties database of cerebral palsy, vision loss and hearing loss in children.4Child was one of only three active registers in the UK that carried out surveillance and monitoring of cerebral palsy which had a continuous unbroken data collection since the 1980s. Until closure of the register we provided annual surveillance reports of rates of cerebral palsy overall and in particular high risk subgroups including low birth weight infants and children born as one of a multiple pregnancy. We also provided surveillance reports of rates of vision loss and hearing loss in children (see project 1.1.8). Following on from the five years funding to 4Child under the Department of Health Disease Active Research Registers Initiative, funding for two further years, to March 2010, has been obtained from the Department of Health managed by the Healthcare Quality Improvement Partnership (HQIP).

In addition to surveillance and monitoring activities the data from 4Child were used in various research projects including the DPhil work of Dr Chris Morris. For this project a sample of children with cerebral palsy was draw from 4Child as the basis of a survey population. Children and their parents were sent a questionnaire which was used to answer a series of research questions including: whether the abilities of children with cerebral palsy explain their activities and participation in social situations; a comparison of professionals' and families' classification of gross motor function using the GMFCS; and an assessment of the reliability of the Manual Ability Classification System. Recent work has included a capture-recapture study of cerebral palsy to assess the completeness of the register. A paper from this analysis has been submitted for publication. Data from the register have also been used in a study to examine the relationship between the target time for decision to delivery interval for emergency caesarean section and outcomes for the neonate and at three years; a paper from this analysis has also been published.

Data about cerebral palsy from 4Child are anonymously pooled with data from the other UK cerebral palsy registers under the auspices of the UKCP collaboration (see projects 1.1.10 and 1.1.11).4Child also contributes data to a European-wide collaboration in which data are anonymously pooled across European partner cerebral palsy registers (SCPE). One major advantage of the SCPE collaboration is the ability to approach questions about small sub-groups of children with cerebral palsy for whom individual registers have insufficient numbers to conduct research, for example extremely low birthweight infants (see publication 2007-03).

During 2009 and 2010 we have been unsucessful in trying to obtain further funding for the continuation of the 4Child register. As a consequence the 4Child register ceased operations and closed to the registration of new cases on 31st Januayr 2011. The register had been in operation since its inception in 1984. Over 100 peer reviewed publications and annual reports each year have been produced from the register. These published outputs have made an important contribution to our understanding of the causes and consequence of cerebral palsy, vision loss and hearing loss. The register data will still be available for analyses and future studies and we shall continue to contribute to the SCPE and UKCP collaborations.

Publications

Journal Articles

• Greenwood C, Yudkin PL, Sellers S, Impey L, Doyle P, Johnson A. Why is there a modifying effect of gestational age on risk factors for cerebral palsy? Arch Dis Child. 2005;90:F141-F6.
• Morris C, Kurinczuk JJ, Fitzpatrick R. Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review. Child: Care Health & Development. 2005;31(4):397-407.
• Jarvis S, Glinianaia SV, Arnaud C, Fauconnier J, Johnson A, McManus V, Topp M, Uvebrant P, Cans C, Krageloh-Mann I, SCPE Collaboration of European Cerebral Palsy Registers. Case gender and severity in cerebral palsy varies with intrauterine growth. Archives of Diseases in Childhood. 2005;90:474-9.
• Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL. Who best to make the assessment? Professionals' and families' classifications of gross motor function in cerebral palsy are highly consistent. Arch Dis Child. 2006;91:675-9.
• McManus V, Guillem P, Surman G, Cans C. SCPE work, standardisation and definition - An overview of the activities of SCPE a collaboration of European CP Registers. Chinese Journal of Contemporary Pediatrics. 2006;8(4):261-5.
• Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL. Do the abilities of children with cerebral palsy explain their activities and participation? Dev Med Child Neurol. 2006;48:954-61.
• Morris C, Kurinczuk JJ, Fitzpatrick R, Rosenbaum PL. Reliability of the Manual Ability Classification System for children with cerebral palsy. Dev Med Child Neurol. 2006;48:950-3.
• Platt MJ, Cans C, Johnson A, Surman G, Topp M, Torrioli MG, Krageloh-Mann I. Trends in cerebral palsy among infants of very low birthweight (<1500 g) or born prematurely (<32 weeks) in 16 European centres: a database study. The Lancet. 2007;369(9555):43-50.
• Morris C. Definition and classification of cerebral palsy: a historical perspective. Dev Med Child Neurol. 2007;49(s2):3-7.
• MacKenzie IZ, Shah M, Lean K, Dutton S, Newdick H, Tucker D. Management of shoulder dystocia trends in incidence and maternal and neonatal morbidity. Obstet Gynecol. 2007;110:1059-68.
• Kenyon S, Pike K, Jones DR, Brocklehurst P, Marlow N, Salt A, Taylor DJ. Childhood outcomes after prescription of antibiotics to pregnant women with spontaneous preterm labour: 7-year follow-up of the ORACLE II trial. The Lancet. 2008;372(9646):1319-27.
• Sellier E, Surman G, Himmelmann K, Andersen G, Colver A, Kr?geloh-Mann I, De-la-Cruz J, Cans C. Trends in prevalence of cerebral palsy in children born with a birthweight of 2,500 g or over in Europe from 1980 to 1998. Eur J Epidemiol. 2010;25(9):635-42.
• Andersen GL, Romundstad P, De La Cruz J, Himmelmann K, Sellier E, Cans C, Kurinczuk JJ, Vik T. Cerebral palsy among children born moderately preterm or at moderately low birthweight between 1980 and 1998: a European register-based study. Dev Med Child Neurol. 2011;53(10):913-9.
• Pearson GA, Kelly B, Russell R, Dutton S, Kurinczuk JJ, MacKenzie IZ. Target decision to delivery intervals for emergency caesarean section based on neonatal outcomes and three year follow-up. Eur J Obstet Gynecol Reprod Biol. 2011;159(2):276-81.
• Marlow N, Pike K, Bower E, Brocklehurst P, Jones D, Kenyon S, Kurinczuk JJ, Taylor D, Salt A. Characteristics of children with cerebral palsy in the ORACLE children study. Dev Med Child Neurol. 2012;54(7):640-6.
• Surman G, da Silva AA, Kurinczuk JJ. Cerebral palsy registers and high-quality data: an evaluation of completeness of the 4Child register using capture-recapture techniques. Child Care Health Dev. 2012;38(1):98-107.
• Stoknes M, Andersen GL, Dahlseng MO, Skranes J, Salvesen KA, Irgens LM, Kurinczuk JJ, Vik T. Cerebral palsy and neonatal death in term singletons born small for gestational age. Pediatrics. 2012;130(6):e1629-35.

Reports

• Ingram J, Blair PS, Powell JE, Manns S, Burden H, Pontin D, Redshaw M, Beasant L, Rose C, Johnson D, Gaunt D, Fleming P. Preparing for Home: a before-and-after study to investigate the effects of a neonatal discharge package aimed at increasing parental knowledge understanding and confidence in caring for their preterm infant before and after discharge from hospital. 2016 Contract No.: 10.