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People

Research Lead

Dr Kate Brown

PIs

  • Dr Kate Bull
  • Dr Jo Wray
  • Victor Tsang
  • Shankar Sridharan
  • Aparna Hoskote
  • Allan Goldman

Contact us

Great Ormond Street Hospital for Children NHS Trust
Great Ormond Street
London WC1N 3JH

Cardio-Respiratory CICU team - Lisa Sharman

+44 (0)20 7405 9200 x8180

Outcome research studies in babies and children

Prevention and Outcomes - Outcome Research Studies in Babies and Children

Overview

Led by Kate Brown, our aim is to assess the various dimensions of outcome in the population of babies and children with heart disease and severe cardio-respiratory failure. The outcomes of our treatments matter deeply to patients, parents and professionals. Evaluation of outcomes forms one of the central tenets of the NHS and is a cornerstone of our work in the cardio- respiratory unit.

Our outcomes research group benefits from functional links with the following: Clinical Operational Research Unit UCL, Central Cardiac Audit Database UK, London Southbank University, London School of Hygiene and Tropical Medicine, Centre for Paediatric Epidemiology and Biostatistics ICH, Children’s Heart Federation, Royal Brompton and Harefield Hospitals NHS Trust, Birmingham Children’s Hospital, Evalina Children’s Hospital, Belfast Children’s Hospital, The Heart Hospital, and Little Hearts Matter.

Key research activities

Tetralogy of Fallot Outcomes

A cohort study of Tetralogy of Fallot funded by the Great Ormond Street Children’s Charity, including over a 1000 patients going back to the first operations performed in 1964 and evaluating dimensions of long term outcome such as survival rates, re-interventions, health related quality of life, cost effectiveness and loss to follow up. Contact - Dr Kate Bull

Paediatric Cardiac Quality of Life Inventory (PCQLI)

A UK validation study of a disease specific measure for evaluation of health related quality of life in children and teenagers with cardiac disease, called the Paediatric Cardiac Quality of Life Inventory (PCQLI). This study has been carried out in collaboration with Royal Brompton Hospital, Birmingham Children’s Hospital and centres in the USA involving nearly 3000 children and teenagers with heart disease. The research output is a new validated patient reported outcome measure (PROM) for use with our patients. This PROM now forms the basis for further research developments in the area of health related quality of life.
Contact - Dr Jo Wray or Kate Brown

Evaluating the Psychological Impact of Illness for Patients and Families

A randomised controlled trial of the impact of a diet and exercise intervention on physical and quality of life outcomes in children after heart transplantation is funded by Heart Research UK.
Contact - Dr Jo Wray

A randomised controlled trial of the effectiveness of a new 3D distraction system for reducing pain and distress in children undergoing dressing changes funded by Well Child.
Contact - Dr Jo Wray

A study of the impact of practical and psychosocial support on parental stress levels (with Oxford Children’s Hospital), funded by the Ronald McDonald House Charities.
Contact - Dr Jo Wray

Standardised Clinical Assessment and Management Plans (SCAMPs)

A pilot study funded by the Great Ormond Street Children’s Charity and the NHS Quality Improvement, Development and Initiative Scheme (QIDIS), in collaboration with several centres from the USA. This project has elements of primary research, formalisation of the translational process of embedding previous research into care pathways to benefit everyday clinical practice and of promoting an international collaboration which will expedite improvements for patients on both sides of the Atlantic.
Contact - Dr Kate Brown or Dr Kate Bull

Dimensions of Outcome on Complex Patient Groups

Qualitative research part funded by the NHS Quality Improvement, Development and Initiative Scheme (QIDIS): collaboration between psychology, qualitative research experts, patient groups and clinicians to explore the dimensions of outcome that matter most to patients. The main focus of this work is on certain highly complex patient groups such as single ventricle patients, children with primary pulmonary hypertension and tracheal stenosis, for whom limited data exists regarding the longer term issues patients and families contend with.
Contact - Dr Jo Wray or Dr Kate Brown

Paediatric Cardiac Surgery Outcomes

National Institute of Health Research (NIHR) funded study to develop a national UK based risk adjustment model for 30-day outcome after paediatric cardiac surgery, in collaboration with the Clinical Operational Research Unit at UCL and the Central Cardiac Audit Database of the UK. This work aims to develop and method to adjust for complexity of case mix when assessing early mortality outcomes, facilitate real time monitoring of outcomes and improve benchmarking methods.
Contact - Dr Victor Tsang or Dr Kate Brown