Research
LHM has proudly been involved in various pieces of medical research over the years. We are honoured to have contributed to the CHD community in this way. Click below to access the various papers.
Research Partnerships
If you are leading a new piece of research and would like to collaborate with Little Hearts Matter, please click here.
Enhancing discharge preparation for parents after complex cardiac surgery: evaluation of an e-learning resource for nurses
A quality improvement project was undertaken between 2018 and 2021 to equip healthcare professionals including children’s cardiac nurses with the knowledge required to use the Congenital Heart Assessment Tool (CHAT)
Neurodevelopmental and Mental Health Outcomes in Patients With Fontan Circulation: A State-of-the-Art Review
Neurodevelopmental and Mental Health Outcomes in Patients With Fontan Circulation: A State-of-the-Art Review Children, adolescents and adults living with Fontan circulation face numerous neurological and developmental challenges. Many patients with
Psychiatric Disorders in Adolescents With Single Ventricle Congenital Heart Disease
Psychiatric Disorders in Adolescents With Single Ventricle Congenital Heart Disease The authors of this research article examined psychiatric disorders and psychosocial functioning in adolescents with single ventricle CHD and to
What does good care look like to people living with congenital heart disease in the 21st century? Qualitative online, asynchronous discussion forums
The aim of this article was to elicit perspectives of people with congenital heart disease (CHD) and/or their parents/carers about their experiences of healthcare and what is important to them
Children’s informed signified and voluntary consent to heart surgery: Professionals’ practical perspectives
This literature discusses children’s consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights
DLA & PIP survey results
Please click here to read the results collected from our DLA and PIP survey.
Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management
The present study aims to review the available literature on surveillance, screening, evaluation, and management strategies and put forward a scientific statement that would comprehensively review the literature and
Newborn pulse oximetry screening: time for equity in the UK?
Congenital heart defects (CHDs) are the commonest congenital malformations, affecting 0·8–1·2% of livebirths globally, and are the leading cause of infant death due to congenital malformations worldwide. Please click
Fontan Circulation Associated Organ Abnormalities Beyond the Heart, Lungs, Liver, and Gut: A Systematic Review
The present study aims to add to the current literature by providing a review of abnormalities described in organ systems beyond the heart, lungs, liver, and gut for patients with
The pathophysiology and complications of Fontan circulation
The present study aims to add to the current literature by providing a review of abnormalities described in organ systems beyond the heart, lungs, liver, and gut for patients with
Hypoplastic Left Heart Syndrome
Hypoplastic left heart syndrome (HLHS) is a rare congenital heart defect in which the left side of the heart is severely underdeveloped and incapable of supporting the systemic circulation. Please click here
Fontan-Associated Liver Disease
The Fontan procedure has gained acceptance and achieved excellent short-term outcomes, it has become evident that most post-Fontan patients develop hepatic fibrosis and even cirrhosis over time, referred to as
Children With Congenital Heart Disease 5 Times More Likely to Have a Mental Health Disorder, Study Finds
Most congenital heart defects develop in the womb and are present at birth. Certain medical conditions, medications, and genes may influence the development of heart defects. Sometimes, structural heart defects
Transforming collaborative research: a national strategy to address the JLA priorities for children and adults with CHD
A national strategy to address the James Lind Alliance priorities for children and adults with congenital heart disease In recent years, outcomes have continued to improve and nowadays around 97%
Leveraging technology for the assessment and monitoring of fragile infants with complex congenital heart disease in the community
Please only complete the below form if you have received an invitation to attend an online focus group on Tuesday 27th September 2022.
What Arts-and-Health Practices Teach Us About Participation, Re-presentation, and Risk
Via AMA Journal of Ethics Sofie Layton, MRes, Jo Wray, PhD, Victoria Walsh, PhD, and Giovanni Biglino, PhD Abstract This article explores the implications of risk in arts-and-health collaborations that
NATIONAL CONGENITAL HEART DISEASE AUDIT (NCHDA)
NATIONAL CONGENITAL HEART DISEASE AUDIT (NCHDA)2022 Summary Report (2020/21 data) Published by National Institute of Cardiovascular Outcomes Research (NICOR) Excerpt: “This report summarises selected key findings from the National Congenital
An improved congenital heart assessment tool: a quality improvement outcome
Published online by Cambridge University Press: 02 May 2022 Kerry L. Gaskin, Liz Smith and Jo Wray Background: CHD was the most prevalent congenital anomaly (60.9 per 10,000, 95% CI 59.0–62.8) in
Taking your Baby home from hospital – Research Project
Taking your baby home after their first surgery is often a scary time. Understanding what to look for and what to seek help with can be confusing. The LHM team
University of Pittsburgh – “New hope for predicting and treating heart failure in babies born with deadly heart defect.” ScienceDaily.
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Children’s informed signified and voluntary consent to heart surgery: Professional’s Practical Perspectives
Little Hearts Matter’s Youth Members and Youth Leader Lexie spoke together about consent on their half a heart journey. This then contributed to a new research paper with some interesting
Champion Study Initial Findings
What was the impact of the first wave of COVID-19 on the delivery of care to children and adults with congenital heart disease? A qualitative study using online forums. Click Research priorities in single-ventricle heart conditions: a United Kingdom national study
Published in 2018, the object of this project was to bring together stakeholders in the United Kingdom to establish national priorities for research in single-ventricle heart conditions. In partnership with
25th Anniversary Membership Survey – Creating a Better Future
Back in 2019, in its 25th Anniversary year, Little Hearts Matter sought to review how the needs of its membership may have changed over the past 25 years and where their
NIHR – Heart surgery in young children
Heart surgery in young children: routine monitoring of complications can help assess the quality of care. Written by friend of LHM, Kate Brown, for the National Institute for Health Research,
Children’s and Parents’ Consent to Heart Surgery – University College London
Children’s and Parents’ Consent to Heart Surgery Research project 2019-2021, September 2021 Thank you very much to everyone who helped with our research from Priscilla, Rosa and Katy at University
BCCA COVID-19 Infection In Congenital Heart Disease Study
BCCA COVID-19 infection in Congenital Heart Disease study
The History Of Treatments For Single Ventricle Heart Conditions
Suzie Hutchinson asked me to write about the early history of treatments for single ventricle over the years; she chose me to write this because I am old! I started
Leg pains in Congenital Heart Disease: A distressing symptom of a wider problem
To read the full report please click here. For many years parents have contacted us about pains that their children have in their legs, especially after a long day of Identifying improvements to complex pathways
Evidence synthesis and stakeholder engagement in infant congenital heart disease. Health services research, published by BMJ Open on 6th June 2016. Click here to access this research.