Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years

Abstract

BackgroundThe assessment of language and cognition in children at risk of impaired neurodevelopment following neonatal care is a UK standard of care but there is no national, systematic approach for obtaining these data. To overcome these challenges, we developed and evaluated a digital version of a validated parent questionnaire to assess cognitive and language development at age 2 years, the Parent Report of Children’s Abilities-Revised (PARCA-R).MethodsWe involved clinicians and parents of babies born very preterm who received care in north-west London neonatal units. We developed a digital version of the PARCA-R questionnaire using standard software. Following informed consent, parents received automated notifications and an invitation to complete the questionnaire on a mobile phone, tablet or computer when their child approached the appropriate age window. Parents could save and print a copy of the results. We evaluated ease of use, parent acceptability, consent for data sharing through integration into a research database and making results available to the clinical team.ResultsClinical staff approached the parents of 41 infants; 38 completed the e-registration form and 30 signed the e-consent. The digital version of the PARCA-R was completed by the parents of 21 of 23 children who reached the appropriate age window. Clinicians and parents found the system easy to use. Only one parent declined permission to integrate data into the National Neonatal Research Database for approved secondary purposes.DiscussionThis electronic data collection system and associated automated processes enabled efficient systematic capture of data on language and cognitive development in high-risk children, suitable for national delivery at scale.

Designing Electronic Data Capture Systems for Sustainability in Low-Resource Settings: Viewpoint With Lessons Learned From Ethiopia and Myanmar

“…Multiple recommendations stress the importance of directly involving those with a deep understanding of clinical context, people (end users), and cultural norms in the EDC development and implementation process. These recommendations align with the current literature, underscoring the importance of leveraging an iterative design approach when developing EDC and involving local end users and experts [ 27 - 29 ]. Others have also described the benefits of KoBo’s ODK and its ability to support EDC in settings with low internet connectivity [ 28 ].…”