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.
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.
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DOI：
10.1136/bmjhci-2023-100781
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发表时间：
2023-06
影响因子：
4.1
通讯作者：
Bravery, Amanda
中科院分区：
文献类型：
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作者：
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
评估新生儿护理后神经发育受损风险儿童的语言和认知是英国的护理标准，但没有全国性的、系统的方法来获得这些数据。为了克服这些挑战，我们开发并评估了一份经过验证的家长问卷的电子版，以评估2岁 岁时的认知和语言发展，《家长儿童能力报告修订本》(PARCA-R)。我们邀请了临床医生和早产婴儿的父母，他们在伦敦西北部的新生儿病房接受护理。我们使用标准软件开发了PARCA-R问卷的数字版本。在知情同意之后，父母会收到自动通知和邀请，当他们的孩子接近适当的年龄窗口时，他们会在手机、平板电脑或电脑上完成问卷调查。家长可以保存并打印结果的副本。我们通过整合到研究数据库并将结果提供给临床团队来评估易用性、父母可接受性、对数据共享的同意。临床工作人员联系了41名婴儿的父母；38名填写了电子登记表，30名签署了电子同意书。PARCA-R的数字版本由23名达到适当年龄窗口的儿童中的21名的父母完成。临床医生和家长发现该系统易于使用。只有一位家长拒绝将数据整合到国家新生儿研究数据库中，用于批准的次要目的。这一电子数据收集系统和相关的自动化程序能够有效、系统地收集有关高危儿童语言和认知发展的数据，适合在全国范围内提供。
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). 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. 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. 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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DOI：
10.1111/1471-0528.17167
发表时间：
2022-09
期刊：
BJOG : an international journal of obstetrics and gynaecology
影响因子：
--
作者：
通讯作者：
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影响因子：
158.5
作者：
Dorling, Jon;Abbott, Jane;Townend, John
通讯作者：
Townend, John
影响因子：
158.5
作者：
Brocklehurst, Peter;Farrell, Barbara;Tarnow-Mordi, William
通讯作者：
Tarnow-Mordi, William
影响因子：
3.6
作者：
Brocklehurst, Peter;Field, David;Rivero-Arias, Oliver
通讯作者：
Rivero-Arias, Oliver
DOI：
10.1136/archdischild-2014-307684
发表时间：
2015-07
期刊：
Archives of disease in childhood. Fetal and neonatal edition
影响因子：
--
作者：
Johnson S;Evans TA;Draper ES;Field DJ;Manktelow BN;Marlow N;Matthews R;Petrou S;Seaton SE;Smith LK;Boyle EM
通讯作者：
Boyle EM