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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

BACKGROUND: The 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...

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Autores principales: Modi, Neena, Ribas, Ricardo, Johnson, Samantha, Lek, Elizabeth, Godambe, Sunit, Fukari-Irvine, Edit, Ogundipe, Enitan, Tusor, Nora, Das, Nayan, Udayakumaran, Abinithya, Moss, Becky, Banda, Victor, Ougham, Kayleigh, Cornelius, Victoria, Arasu, Anusha, Wardle, Steve, Battersby, Cheryl, Bravery, Amanda
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10314588/
https://www.ncbi.nlm.nih.gov/pubmed/37364923
http://dx.doi.org/10.1136/bmjhci-2023-100781
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author Modi, Neena
Ribas, Ricardo
Johnson, Samantha
Lek, Elizabeth
Godambe, Sunit
Fukari-Irvine, Edit
Ogundipe, Enitan
Tusor, Nora
Das, Nayan
Udayakumaran, Abinithya
Moss, Becky
Banda, Victor
Ougham, Kayleigh
Cornelius, Victoria
Arasu, Anusha
Wardle, Steve
Battersby, Cheryl
Bravery, Amanda
author_facet Modi, Neena
Ribas, Ricardo
Johnson, Samantha
Lek, Elizabeth
Godambe, Sunit
Fukari-Irvine, Edit
Ogundipe, Enitan
Tusor, Nora
Das, Nayan
Udayakumaran, Abinithya
Moss, Becky
Banda, Victor
Ougham, Kayleigh
Cornelius, Victoria
Arasu, Anusha
Wardle, Steve
Battersby, Cheryl
Bravery, Amanda
author_sort Modi, Neena
collection PubMed
description BACKGROUND: The 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). METHODS: We 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. RESULTS: Clinical 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. DISCUSSION: This 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.
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spelling pubmed-103145882023-07-02 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 Modi, Neena Ribas, Ricardo Johnson, Samantha Lek, Elizabeth Godambe, Sunit Fukari-Irvine, Edit Ogundipe, Enitan Tusor, Nora Das, Nayan Udayakumaran, Abinithya Moss, Becky Banda, Victor Ougham, Kayleigh Cornelius, Victoria Arasu, Anusha Wardle, Steve Battersby, Cheryl Bravery, Amanda BMJ Health Care Inform Original Research BACKGROUND: The 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). METHODS: We 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. RESULTS: Clinical 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. DISCUSSION: This 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. BMJ Publishing Group 2023-06-23 /pmc/articles/PMC10314588/ /pubmed/37364923 http://dx.doi.org/10.1136/bmjhci-2023-100781 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Modi, Neena
Ribas, Ricardo
Johnson, Samantha
Lek, Elizabeth
Godambe, Sunit
Fukari-Irvine, Edit
Ogundipe, Enitan
Tusor, Nora
Das, Nayan
Udayakumaran, Abinithya
Moss, Becky
Banda, Victor
Ougham, Kayleigh
Cornelius, Victoria
Arasu, Anusha
Wardle, Steve
Battersby, Cheryl
Bravery, Amanda
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10314588/
https://www.ncbi.nlm.nih.gov/pubmed/37364923
http://dx.doi.org/10.1136/bmjhci-2023-100781
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