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Development and preliminary testing of the Brief Developmental Assessment: an early recognition tool for children with heart disease

Published online by Cambridge University Press:  13 February 2018

Jo Wray ,
Katherine L. Brown ,
Deborah Ridout ,
Monica Lakhanpaul ,
Liz Smith ,
Angie Scarisbrick ,
Sara O’Curry  and
Aparna Hoskote
Jo Wray*
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Katherine L. Brown
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Deborah Ridout
Affiliation:
Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom
Monica Lakhanpaul
Affiliation:
Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, United Kingdom
Liz Smith
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Angie Scarisbrick
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
Sara O’Curry
Affiliation:
Paediatric Clinical Psychology, Addenbrookes Hospital, Cambridge, United Kingdom
Aparna Hoskote
Affiliation:
Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, United Kingdom
*
Correspondence to: Dr J. Wray, Charles West Division, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH. Tel: 020 78297822; E-mail: [email protected]
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Abstract

Introduction

Neurodevelopmental abnormalities are common in children with CHD and are the highest-priority concerns for parents and professionals following cardiac surgery in childhood. There is no additional routine monitoring of development for children with CHD in the United Kingdom; hence, neurodevelopmental concerns may be detected late, precluding early referral and intervention.

Methods

An early recognition tool – the “Brief Developmental Assessment” – was developed using quality improvement methodology involving several iterations and rounds of pilot testing. Our requirements were for a tool covering important developmental domains and practicable for use within inpatient and outpatient settings by paediatric cardiac health professionals who are non-developmental specialists, without specialised equipment and which involved direct observation, as well as parental report.

Results

Items were included in the tool based on existing developmental measures, covering the domains of gross and fine motor skills, daily living skills, communication, socialisation, and general understanding. Items were developed for five age bands – 0–16 weeks, 17–34 weeks, 35–60 weeks, 15 months–2.9 years, and 3–4.9 years – and the final versions included a traffic light scoring system for identifying children with possible delay in any or all domains. Preliminary testing indicated excellent inter-rater reliability, an ability to detect children with a diagnosis known to be associated with developmental delay, and largely acceptable internal reliability.

Conclusion

We report the evolution and preliminary testing of an early recognition tool for assessing the development of children with heart disease; this was encouraging and sufficiently good to support further validation in a larger study.

Keywords

CHDneurodevelopmentalearly recognition tool
Type
Original Articles
Information
Cardiology in the Young , Volume 28 , Issue 4 , April 2018 , pp. 582 - 591
Copyright
© Cambridge University Press 2018 

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