Childhood outcomes of congenital heart disease in a prospectively defined national cohort

Lead Research Organisation: University College London
Department Name: Unlisted

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Publications

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Knowles R. L. (2008) Factors influencing height and weight at 10-14 years in UK children with congenital heart defects in JOURNAL OF EPIDEMIOLOGY AND COMMUNITY HEALTH

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Knowles, Rachel (2010) Childhood mortality and survival with serious congenital heart defects: a UK cohort study. in Excellence in Paediatrics (Acta Paediatrica)

 
Description Child Health Reviews UK - (HQIP-funded; UCL/RCPCH collaboration)
Geographic Reach National 
Policy Influence Type Citation in clinical reviews
URL http://www.rcpch.ac.uk/child-health-reviews-uk/programme-findings/programme-findings
 
Description External Policy Review for UK National Screening Committee
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Commissioned external review of congenital heart disease screening for UK National Screening Committee. Led to public consultation on introduction of pulse oximetry screening and provided an evidence base for the UK NSC decision to evaluate pulse oximetry screening in the UK through a limited pilot.
URL http://www.screening.nhs.uk/congenitalheartdisease
 
Description NICE Antenatal Care Guidelines Review
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact My expertise in antenatal and newborn detection of congenital heart defects contributed to current NICE guidelines for antenatal care and screening. These guidelines influence policy and practice and contribute to improved birth outcomes.
 
Description Newborn and Infant Physical Examination (NIPE) workshop on 6-8 week examination
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
Impact National Screening Committee NIPE workshop with health professionals to finalise the NIPE Standards & Competencies for the 6-8 week physical examination. Contributed to development of NIPE Standards & Competencies document currently in use for national rollout of NIPE Programme.
 
Description PHE Newborn Screening Pulse Oximetry Pilot Board
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact The pilot of newborn screening pulse oximetry is being undertaken through the NHS Newborn and Infant Physical Examination programme (involving Public Health England and the UK National Screening Committee) and is evaluating whether a change in the newborn screening programme should be implemented throughout the UK.
URL https://phescreening.blog.gov.uk/2015/07/30/newborn-pulse-oximetry-screening-pilot-under-way/
 
Title NADA Metadata Catalog 
Description A DDI2 metadata archive of the dataset has been created using NESStar. 
Type Of Material Improvements to research infrastructure 
Year Produced 2010 
Provided To Others? Yes  
Impact Publication of the NADA SERPent Catalog containing high level metadata. Collaboration with partners across UCL in the Secure Epidemiology Research Platform (SERPent) project. Presentation to data managers at the DDI Metadata Conference (May 2011). 
URL https://epilab.ich.ucl.ac.uk/nada/index.php/catalog
 
Description British Heart Foundation: UKCSCHD 
Organisation British Heart Foundation (BHF)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Undertook epidemiological study of 'Childhood Outcomes of Congenital Heart Disease: a national cohort study' utilising the UK Collaborative Study of Congenital Heart Defects (UKCSCHD) - a national cohort of children with heart defects born in the UK from 1992-1995. Principal Investigators: Professor C Dezateux, Dr R Knowles, Dr C Wren.
Collaborator Contribution Funding and support for dissemination.
Impact PAPERS: 1. Knowles RL, Bull C, Wren C, Dezateux C. Ethics, governance and consent in the UK: implications for research into the longer-term outcomes of congenital heart defects. Arch Dis Child 2011;96:14-20 2. Knowles RL, Bull C, Wren C, Dezateux C. Changing mortality with congenital heart defects during fifty years of advances in health technologies: England and Wales, 1959-2009. Arch Dis Child 2012 Oct;97(10):861-5. CONFERENCE ABSTRACTS: 3. Knowles RL, Bull C, Wren C, Dezateux C. Factors influencing height and weight at 10-14 years in UK children with congenital heart defects. J Epidemiol Child Health 2008; 62(Suppl I): A16. 4. Knowles RL, Bull C, Wren C, Dezateux C. (2008) Influence of extracardiac anomalies on survival to age 10 years in children with congenital heart defects. 21st Annual Meeting of the Society for Pediatric and Perinatal Epidemiologic Research (SPER), Chicago, Illinois; 2008: A13. 5. Knowles RL, Bull C, Wren C, Dezateux C. (2008) Are there sex differences in survival to age 10 years in children with congenital heart defects? 18th IEA World Congress of Epidemiology, Porto Alegre, Brazil. 6. Knowles RL, Bull C, Wren C, Dezateux C. (2009) Predictors of survival from birth to 15 years of age for children with congenital heart defects. Prevention of Congenital Anomalies, 10th European Symposium Eurocat, Bilbao, Spain, 2009. 7. Knowles RL, Bull C, Wren C, Dezateux C. Complete atrioventricular septal defect, sex and survival. Royal College of Paediatrics and Child Health 13th Spring Meeting, York, UK. Arch Dis Child 2009; 94 (Suppl I): A52. 8.Knowles RL, Bull C, Wren C, Wade A, Dezateux C. Childhood mortality and survival with serious congenital heart defects: a UK cohort study. Excellence in Paediatrics, London. Acta Paediatr 2010;99 (Suppl 462):54. 9. Knowles RL, Dezateux C, Bull C, Wren C, Goldstein H, Wade A. (2012) Multilevel multiple imputation to address missing values for procedure-related predictors: application to data modelling childhood survival with congenital heart defects. Population health - methods and challenges (MRC Population Health Sciences Network), Birmingham, UK, 2012. 10. Day TG, Dezateux C, Wade A, Bull C, Wren C, Knowles RL. (2012) Quality of life in school-age survivors of severe congenital heart disease: results from the UK Collaborative Study of Congenital Heart Defects (UKCSCHD). 46th Annual Meeting of the Association for European Paediatric and Congenital Cardiology, Istanbul, Turkey, 2012. 11. Knowles RL, Tadic V, Hogan A, Bull C, Wren C, Rahi J, Dezateux C. Illness narratives from school-age children with congenital heart defects: children's perspectives on life experiences and coping strategies related to severity of cardiac diagnosis. 47th Annual Meeting of the Association of European Paediatric and Congenital Cardiology (AEPC). Cardiology in the Young 2013; 23(Suppl I):S4. 12. Knowles RL, Tadic V, Hogan A, Bull C, Wren C, Rahi J, Dezateux C on behalf of the UK Collaborative Study of Congenital Heart Defects. (2013) Children's perspectives on having a congenital heart defect: does the severity of cardiac diagnosis influence their approach to daily life? RCPCH 17th Annual Conference/6th Europaediatrics, Glasgow.
 
Description MRC Centre of Epidemiology in Child Health 
Organisation University College London
Department MRC Centre for Epidemiology for Child Health
Country United Kingdom 
Sector Academic/University 
PI Contribution Participation in Centre scientific and academic seminars, workshops, symposia and masterclasses and multi-disciplinary team working; Contribution to the MRC Centre-led epidemiological overview of the child deaths review, commissioned by the Dept of Health (through HQIP).
Collaborator Contribution • Access to a critical mass of epidemiological and statistical expertise applied to children's health creating a positive working environment that contributes to researcher capacity, scientific excellence, methodological expertise and impact in this field. The mission of the MRC Centre of Epidemiology for Child Health is to improve the health and well being of children by conducting, and contributing to the application of, high quality interdisciplinary research. The MRC Centre adds value by: exploiting opportunities for electronic health record linkage; developing and applying advanced statistical methods; capacity building in genetic epidemiology; and developing approaches to policy research in child health. • Provision of Epilab: The epiLab is an advanced computing environment and data management service that has been developed at the MRC Centre to support researchers through all aspects of the research data management life-cycle. The service provides core data storage and backup provision in conjunction with a virtualised desktop and backend-server infrastructure, designed to provide high levels of resilience and information security. Additional services provide users with tools, training and assistance with data transfer, metadata management, data collection, archival and destruction and pseudonymisation. • Statistical support: several statisticians within the Centre provide statistical support for ongoing projects, in terms of study design, e.g. power calculations, or analysis, advising on and helping to interpret the analyses, or else doing the analyses in collaboration. • A strong track record in delivering excellent training and early career development support with opportunities to access supervision and supervisory experience for epidemiologists, statisticians and other population health scientists as well as clinicians from public health, paediatrics and paediatric sub-specialties reflecting the focus of the Centre's work on longitudinal epidemiological studies of population samples or patient cohorts.
Impact Development of statistical models for multiple imputation in a hierarchical dataset (multidisciplinary collaboration with clinicains and statisticians). Abstract accepted at MRC Population Health Sciences Research Network meeting 2012.
Start Year 2007
 
Description Patient-reported outcome measures (PROMS) for children 
Organisation Great Ormond Street Hospital (GOSH)
Country United Kingdom 
Sector Hospitals 
PI Contribution We led the development of a research-clinical network aimed at sharing knowledge and experience of developing and applying PROMS for child self-reporting. We undertook a systematic literature review of vision PROMS and a qualitative analysis of children's narratives on having a heart defect using data from the UK Collaborative Study of Congenital Heart Defects (UKCSCHD).
Collaborator Contribution Clinical staff shared expertise and participated actively in a day long workshop by contributing examples of successful and unsuccessful clinical and research work involving PROMS. Clinical partners at GOS ran two patient and parent focus groups.
Impact 1. Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review. (2013) Tadic´ V, Hogan A, Sobti N, Knowles RL, Rahi JS. Br J Ophthalmol. 2013 Nov;97(11):1369-81. doi: 10.1136/bjophthalmol-2013-303350 2. Knowles RL, Tadic V, Hogan A, Bull C, Wren, Rahi J, Dezateux C. Illness narratives from school-age children with congenital heart defects: children's perspectives on life experiences and coping strategies related to severity of cardiac diagnosis. Oral presentation, 47th Annual Meeting of the Association for European Paediatric Cardiology, London, May 2013. Cardiology in the Young 2013; 23(Suppl I):S4. 3. Knowles RL, Tadic V, Hogan A, Bull C, Wren, Rahi J, Dezateux C. Children's perspectives on having a congenital heart defect: Does the severity of cardiac diagnosis influence their approach to daily life? Oral presentation, 6th Europaediatrics Meeting, Glasgow, June 2013. 4. 2. Tadic V, Knowles RL, Hogan A, Rahi, JS. (2012) Paediatric Patient-Reported Outcome and Experience Measures (PROMS and PREMS) in Routine Clinical Practice. (2012) UCL Institute of Child Health: London, UK. DOI:http://dx.doi.org/10.5334/512f8b249ab13 URL:http://discovery.ucl.ac.uk/1382617/ 5. 3. Tadic V, Hogan A, Ahmed R, Knowles RL, Rahi, JS. (2012) Patient Reported Outcome and Experience Measures (PROMs and PREMs): Service Users' Perspectives. Paediatric PROM&PREM Network: London, UK. URL:http://discovery.ucl.ac.uk/1397058/
Start Year 2011
 
Description Patient-reported outcome measures (PROMS) for children 
Organisation Moorfields Eye Hospital NHS Foundation Trust
Country United Kingdom 
Sector Public 
PI Contribution We led the development of a research-clinical network aimed at sharing knowledge and experience of developing and applying PROMS for child self-reporting. We undertook a systematic literature review of vision PROMS and a qualitative analysis of children's narratives on having a heart defect using data from the UK Collaborative Study of Congenital Heart Defects (UKCSCHD).
Collaborator Contribution Clinical staff shared expertise and participated actively in a day long workshop by contributing examples of successful and unsuccessful clinical and research work involving PROMS. Clinical partners at GOS ran two patient and parent focus groups.
Impact 1. Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review. (2013) Tadic´ V, Hogan A, Sobti N, Knowles RL, Rahi JS. Br J Ophthalmol. 2013 Nov;97(11):1369-81. doi: 10.1136/bjophthalmol-2013-303350 2. Knowles RL, Tadic V, Hogan A, Bull C, Wren, Rahi J, Dezateux C. Illness narratives from school-age children with congenital heart defects: children's perspectives on life experiences and coping strategies related to severity of cardiac diagnosis. Oral presentation, 47th Annual Meeting of the Association for European Paediatric Cardiology, London, May 2013. Cardiology in the Young 2013; 23(Suppl I):S4. 3. Knowles RL, Tadic V, Hogan A, Bull C, Wren, Rahi J, Dezateux C. Children's perspectives on having a congenital heart defect: Does the severity of cardiac diagnosis influence their approach to daily life? Oral presentation, 6th Europaediatrics Meeting, Glasgow, June 2013. 4. 2. Tadic V, Knowles RL, Hogan A, Rahi, JS. (2012) Paediatric Patient-Reported Outcome and Experience Measures (PROMS and PREMS) in Routine Clinical Practice. (2012) UCL Institute of Child Health: London, UK. DOI:http://dx.doi.org/10.5334/512f8b249ab13 URL:http://discovery.ucl.ac.uk/1382617/ 5. 3. Tadic V, Hogan A, Ahmed R, Knowles RL, Rahi, JS. (2012) Patient Reported Outcome and Experience Measures (PROMs and PREMs): Service Users' Perspectives. Paediatric PROM&PREM Network: London, UK. URL:http://discovery.ucl.ac.uk/1397058/
Start Year 2011
 
Description SERPent (Secure Epidemiology Research Platform) 
Organisation Jisc
Country United Kingdom 
Sector Public 
PI Contribution Contribution of UK Collaborative study of Congenital Heart Defects metadata. Development of an exemplar epidemiological metadata catalog using DDI2 standard.
Collaborator Contribution Contribution of epidemiological study metadata, e.g. Whitehall Study. collaborative working to produce epidemiological metadata catalog using DDI2 standard.
Impact Online publication of a metadata catalog of epidemiological studies, including metadata from the UK Collaborative study of Congenital Heart Defects.
Start Year 2010
 
Description SERPent (Secure Epidemiology Research Platform) 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Contribution of UK Collaborative study of Congenital Heart Defects metadata. Development of an exemplar epidemiological metadata catalog using DDI2 standard.
Collaborator Contribution Contribution of epidemiological study metadata, e.g. Whitehall Study. collaborative working to produce epidemiological metadata catalog using DDI2 standard.
Impact Online publication of a metadata catalog of epidemiological studies, including metadata from the UK Collaborative study of Congenital Heart Defects.
Start Year 2010
 
Description Toronto Sick Children's Hospital, Canada 
Organisation Hospital for Sick Children, Toronto
Department Department of Paediatric Cardiology
Country Canada 
Sector Hospitals 
PI Contribution Epidemiological and statistical expertise in research data analysis.
Collaborator Contribution Expertise in quality of life outcomes of adults with congenital heart disease. Access to locally collected data.
Impact Publication: Knowles RL, Veldtman G, Hickey EJ, Bradley T, Gengsakul A, Webb GD, Williams WG, McCrindle BW. Functional Health Status of Adults With Tetralogy of Fallot: Matched Comparison With Healthy Siblings. Ann Thorac Surg 2012 Jul;94(1):124-32.
 
Description Cardiology in the Young 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact Invited lecture presenting interim results of cohort study to an audience of paediatric cardiologists (consultants and junior doctors) and nurses from UK and overseas, as well as members of the British Congenital Cardiac Association who had participated in the cohort study. Presentation title: Survival for congenital heart defects beyond the first year of life: findings from the UKCSCHD.

Led to further invited presentation to wider audience of general paediatricians (consultants and junior doctors in training) with an interest in cardiology.
Year(s) Of Engagement Activity 2009
 
Description Paediatric Cardiology for Paediatricians (PECSIG) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact Invited presentation titled: Survival from serious congenital heart defects beyond the first year of life. Presented preliminary results from study to contribute to training of general paediatricians. Question and answer session with representative of Congenital Cardiac Audit Database.

Feasibility of record linkage with Congenital Cardiac Audit Database team to be explored.
Year(s) Of Engagement Activity 2009
 
Description Patient-reported outcomes workshop 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We established two patient and parent focus groups and involved parents as representatives to the workshop, therefore incorporating both professional and public/patient views. We produced two written reports, one on the focus group and one on the workshop, as well as as a webpage detailing the activity. This has provided a focus for improved networking between different groups who are developing and implementing PROMS.

We established an email discussion list which has received enquiries from across the UK, demonstrating that we provide a focus for sharing experience in this area of research.
Year(s) Of Engagement Activity 2012
URL http://www.ucl.ac.uk/ich/research-ich-old/mrc-cech/research/collaborations/child-proms