ePARCA-R Service Improvement Study: Systematic electronic capture of parent reported cognitive and language development in children aged two-years
Aims: We are carrying out a study to test processes we have developed to obtain two-year language and cognitive outcome data using state-of-the art electronic technologies to provide an electronic version the standardised parent questionnaire, the PARCA-R, and incorporate the results into the National Neonatal Research Database (NNRD) so that they are available for clinical and authorised secondary purposes.
Background: The assessment of the language and cognitive development of children born extremely preterm, and other groups at risk of impaired neurodevelopment, is a UK standard of care. These data are also essential for follow-up evaluations of babies who participate in neonatal randomised controlled trials. NICE recommends the use of the PARCA-R. However, there is currently no national, systematic approach for obtaining these data.
As a consequence, many at-risk children do not receive language and cognitive assessments at 2 years of age; information on language and cognitive development are not available for complete populations of children though this is essential to quantify the prevalence of delayed development and estimate remedial resource requirements; many neonatal clinical trials lack outcome information on language and cognitive development because of the difficulty in securing funding for long-term follow-up; the lack of a uniform system results in wide variation in outcome assessments making it difficult to combine and interpret data on a population level for clinical purposes, audit and research; and when funding for research assessments is available, children and their families often experience a burden of dual assessment for clinical care and research
The study: We are piloting a new approach involving an electronic version of the PARCA-R (ePARCA-R). The UK Research Ethics Service has confirmed this is a service improvement study, not a research study. It is led by the Neonatal Data Analysis Unit and supported by the Imperial Clinical Trials Unit.
- Professor Neena Modi, Professor of Neonatal Medicine, Imperial College London
- Professor Samantha Johnson, Professor of Child Development, University of Leicester
- Dr Elizabeth Lek, Consultant Neonatologist, Hillingdon Hospitals NHS Foundation Trust
- Dr Sunit Godambe, Consultant Neonatologist, Imperial NHS Trust (Queen Charlotte’s and Chelsea Hospital and St Mary’s Hospital)
- Dr Edit Fukari-Irvine, Consultant Neonatologist, Northwick Park Hospital
- Dr Nora Tusor and Dr Enitan Ogundipe, Consultant Neonatologists, Chelsea and Westminster NHS Foundation Trust
- Dr Elizabeth Eyre, Consultant Neonatologist, West Middlesex Hospital
- Ms Debbie Belazel, representing the national sick and preterm newborn charity, Bliss
- Dr Steve Wardle, Consultant Neonatologist, Nottingham University Hospital(representing the British Association of Perinatal Medicine)
- Dr Anusha Arasu, Consultant Neonatologist, King’s College Hospital, Lead for Neonatal Neurodevelopmental Follow-up (representing the British Association of Neonatal and Neurodevelopmental Follow-Up)
- Dr Victoria Cornelius, Head of Statistics, Imperial Clinical Trials Unit