Title: Growth and nutrition of infants with congenital heart disease: development of guidelines and a digital home monitoring programme to support families
Funder: Health Education England

Abstract: Title: Growth and nutrition of infants with congenital heart disease: development of guidelines and a digital home monitoring programme to support families Background: Congenital heart disease (CHD) represents one third of all major congenital anomalies, resulting in approximately 5,000 CHD births per annum, of which 4,000 need surgery. Although there have been significant improvements in the medical/surgical management of children with CHD, a large proportion of infants-with-CHD have growth failire and feeding difficulties, increasing length of hospital stay and late mortality. In addition poor weight gain causes significant parental anxiety, as parents are very aware that good growth will result in better surgical outcomes. Currently, there are no nutrition standards which outline how best to nourish infants awaiting surgery. Furthermore, nutrition support for families varies considerably with poor growth delaying surgery and increasing the risk of post-surgical complications.Aims: This programme of work aims to improve how the NHS offers nutritional information and support to families with infants-with-CHD who are awaiting surgery.It aims to develop simple nutrition information and guidelines for parents and health-care-professionals (HCPs) for infants-with-CHD who are awaiting surgery, standardising nutritional care. The information developed, will be delivered as part of digital home monitoring and subsequently tested in a feasibility study to evaluate whether this method of remote nutrition support and growth surveillance is acceptable and feasible for parent's/ HCPs to use.Research questions:What are the essential elements of nutrition-guidelines and information, according to HCPs and parents, which will help achieve: improve growth in infants-with-CHD awaiting surgery reducing parenting stress Is monitoring nutrition intake and growth in infants-with-CHD before surgery, using a digital-home-monitoring-programme (MyHealthVault) easy, feasible and acceptable for parent's/HCPs to use? Plan of investigation: This programme of work will contain 3 linked phases based on the development phase of the MRC Guidance on the Development and Evaluation of Complex interventions. Phase 1: Development of simple nutrition information for parents and guidelines for health professionals using current evidence, consensus Delphi methods with paediatric cardiology nutrition experts.Phase 2: Incorporating the guidelines and nutrition information into an existing online digital home monitoring programme (MyHealthVault). This will be done in collaboration with parents, health professionals and PPI in an iterative process of feedback and development using qualitative methods. Students from the Winchester Art School, Southampton University will be provided with a brief to design and format print and digital versions of the materials. Phase 3: Feasibility study (n=50) with parent of infants-with-CHD awaiting surgery. Families will use the home monitoring programme to access feeding information, HCP support and to help monitor the growth of their infants at home. This study will evaluate whether the home-monitoring-programme is acceptable and feasible for parents and HCPs to use. Summary of benefits to patient and NHS The expected output from this project would be a nutrition- intervention package, which will include a structured manual for HCPs and information for parent's. These outputs will facilitate testing and implementation of the intervention on a multicenter level, and will be available freely for HCPs to ustilise once efficacy has been established. In addition the study aims to produce scientific publications and conference presentations. The produced materials, including the nutrition-guidance, and parent information, will be shared with clinicians, units and parents. The lessons learned here regarding standardising nutritional care and engaging parents to support the nutritional care of their unwell child may be applicable to other areas of paediatric care such as those with chronic renal disease or gastrointestinal disorders.

Lay abstract: Aim: This study aims to develop feeding guidelines and information for health care professionals and parents. These will be used for babies with heart problems before they have surgery as part of an online - home-monitoring-programme (My Health Record).Background to the research Congenital heart disease (CHD) is one of the most common birth problems in infants, found in 9 out of every 1,000 babies born. Some heart problems are serious needing two or more operations, which can be months apart. For lots of different reasons feeding problems and poor weight gain is common. At Southampton, we have shown babies with CHD who do not gain weight well before their operation have a longer stay in hospital and problems after surgery making parents worry.Most babies with heart problems should see a dietitian who will give individual feeding advice and follow up, helping babies gain weight and overcoming feeding problems. Unfortunately, many babies do not get to see a dietitian before their operation. As a result, parents often do not receive enough written information or support with feeding problems and weight gain. This lack of support can be very stressful for parents, and increase their worry about their child. In this study we would like to test the use of My Health Record, an online - home-monitoring-programme. With the help of a health visitor or community nurse, parents will be asked to weigh their baby weekly, as well as keeping a feed diary. Parents will send this information to the dietitian using the online home-monitoring-programme. The dietitian will then give parents weekly feedback as to how well their baby is gaining weight and provide support with any feeding problems.We want to see whether using this online home-monitoring-programme can help to better support parents at home. Through the home-monitoring-programme, we will be able to provide regular individual advice for each baby and information about how best to help support weight gain and overcome feeding problems.Design and methods used:Part 1 Guideline development: Drawing on expertise from hospitals that specialise in children CHD we will develop nutrition guidelines and information. Part 2 Guideline improvement and finalisation: Parents and healthcare professionals will review the guidelines, ensuring they are clear, easy to use and understandable. Art and Design students from Winchester School of Art will help design the layout of the information before we print booklets and put the information on-line.Part 3 Small study to test online home monitoring programme: In this study parents of 50 babies who we know are at high risk of poor weight gain will be invited to take part. They will be provided with a feeding plan by a dietitian. Using My Health Record parents will record information about their baby each week. This will include weight and feeding information. Parents will then get feedback as to how well their baby is gaining weight as well as an updated nutrition feeding plan. My Health Record also has a messaging service allowing parents to stay in touch with the team more easily. We want to see if 1) it makes it easier for the health team to keep in touch with parents 2) whether it improve weight gain in infants before surgery 3) whether parents feel less worried about their baby's feeding and weight gain. Benefits to patients This study has been developed with the help of parents of babies with CHD, to ensure it reflects the support needs of parents. They will continue to be involved as the project progresses.This research will produce guidelines and information for parents, providing them with advice and support that is currently lacking on feeding their babies before heart surgery.Having these guidelines and information provided through My Health Record will allow parents to be in regular contact with health teams, receiving support and individual feeding plans. It is hoped that this additional support will help improve weight gain before surgery, and outcomes following surgery. Feedback from parents suggests this will make other parents feel less stressed about feeding and feeding difficulties. If this small study is successful then we plan to do a bigger study involving other hospitals with specialist heart centres in the UK.Dissemination The results from the project will be disseminated widely, within scientific journals, parent magazines and forums and at local and international conferences. With the help of our PPI group the results from this research will be shared with parent groups and charity organisations such as Little Heart Matters.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CARDIOVASCULAR;REPRODUCTIVE HEALTH AND CHILDBIRTH