The role of different diets in children who are gastrostomy fed
Research type
Research Study
Full title
The role of different diets in children who are gastrostomy fed; an exploratory sequential mixed methods study
IRAS ID
253510
Contact name
Lorna K Fraser
Contact email
Sponsor organisation
University of York
Duration of Study in the UK
3 years, 5 months, 31 days
Research summary
There are growing numbers of children living in England who require to be fed through a tube directly into the stomach (gastrostomy). The current professional recommendations in England are that formula feeds should be used when children are fed by gastrostomy, but there are growing numbers of parents who are choosing to feed their own children a more conventional diet of home-blended foods. This study aims to address a research gap by assessing the symptom profile (reflux, constipation, pain) and quality of life of children who are gastrostomy fed, comparing those who are formula fed and those who are predominantly fed a home-blended diet. The study will also examine the impact on parents’ quality of life and explore costs to the families and the NHS. Stage 1: Interviews of parents (n=20) of children who are gastrostomy fed, young people (n=5-10) who are gastrostomy fed, and relevant healthcare professionals (n=24-32) including paediatrician, dietitians and community nurses. We will ask participants to identify important outcomes for children with a gastrostomy (e.g. symptoms, quality of life, safety, complications) and also explore the best way to measure these outcomes in this study.
Stage 2: 300 children who are gastrostomy fed and their parents will be recruited from children’s health services and followed up for 18 months during which time the outcomes identified from stage 1 will be measured. Detailed clinical information (e.g. diagnosis, medications) will also be collected from the child’s paediatrician and dietitian. The safety and risk of complications will be examined by asking parents about visits to A and E and hospital and also by examining hospital records. At the end of the study we will compare the different outcomes, symptoms, complications, and costs between children who are formula fed and those who are mainly fed blended food.Why did we do this study?
More children require long term tube feeding(gastrostomy). Formula feeds are recommended in England, but more parents are using home-blended meals. There is currently a lack of evidence on the symptoms or safety of this in comparison with formula feeds. We wanted to explore this, impact on parents’ quality of life, and costs to families and the NHS.What did we do?
We spoke to parents of children who are gastrostomy fed, two children and healthcare professionals. They identified important outcomes and how we might measure these.
180 children who were gastrostomy fed joined this study and provided data at three time points over 18 months. We asked parents about visits to A&E and hospital for complications as well as gastrointestinal symptoms. We compared outcomes between children who are formula fed and those receiving a home-blended food.What did we find?
Workstream 1
Parents identified outcomes; impacts on physical well-being; digestive symptoms; sleep quality; and time required for gastrostomy feeding.
Workstream 2
Children receiving a home-blended diet were more likely to live in areas of lower deprivation; their parents had higher levels of education; they had higher dietary fibre intake. One hundred and thirty-four (74%) and 105 (58%) children provided follow-up data at 12 and 18 months. Children receiving a home-blended diet had lower gastro-intestinal symptoms at all time points and had higher calories/kg and fibre. Both groups had adequate micronutrient intake apart from low vitamin D in the home-blended diet group. Safety outcomes were similar between groups. Costs to the statutory sector were higher among formula-fed children but costs to families were higher for the home-blended diet group.What does this mean for gastrostomy-fed children?
Parents of children who are gastrostomy fed will be able to make more informed choices over their child’s diet.REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
19/YH/0028
Date of REC Opinion
25 Mar 2019
REC opinion
Further Information Favourable Opinion