The risks, benefits, and resource implications of different diets in gastrostomy-fed children: The YourTube mixed method study.

Background: Many children receive some or all their nutritional intake via a gastrostomy. More parents are using home-blended meals to feed their children, reporting beneficial effects, such as improved gastro-oesophageal reflux and less distress.

Aim: To compare safety, outcomes and resource use of those on home-blended diets compared to formula diets.

Methods: A mixed-methods study of gastrostomy-fed children.

Workstream 1: Qualitative study involving semistructured interviews with parents (n ≈ 20) and young people (n ≈ 2) and focus groups with health professionals (n ≈ 41).

Workstream 2: Cohort study; data were collected on 180 children at months 0, 12 and 18 from parents and clinicians using standardised measures. Data included gastrointestinal symptoms, quality of life, sleep (child and parent), dietary intake, anthropometry, healthcare usage, safety outcomes and resource use. Outcomes were compared using propensity scored weighted multiple regression analyses.

Results: workstream 1: Participants believed the type of diet would most likely affect gastrointestinal symptoms, time spent on feeding, sleep and physical health.

Workstream 2: Baseline: Children receiving a home-blended diet and those receiving a formula diet were similar in terms of diagnoses and age, but those receiving a home-blended diet were more likely to live in areas of lower deprivation and their parents had higher levels of education. They also had a higher dietary fibre intake and demonstrated significantly better gastrointestinal symptom scores compared to those receiving a formula diet (beta 13.8, p < 0.001). The number of gut infections and tube blockages were similar between the two groups, but stoma site infections were lower in those receiving a home-blended diet. Follow-up: There were 134 (74%) and 105 (58%) children who provided follow-up data at 12 and 18 months. Gastrointestinal symptoms were lower at all time points in the home-blended diet group, but there was no difference in change over time within or between the groups. The nutritional intake of those on a home-blended diet had higher calories/kg and fibre, and both home-blended and formula-fed children have values above the Dietary Reference Values for most micronutrients. Safety outcomes were similar between groups and over time. Total costs to the statutory sector were higher among children who were formula fed, but costs of purchasing special equipment for home-blended food and the total time spent on child care were higher for families with home-blended diet.

Conclusion: Findings show that home-blended diets for children who are gastrostomy fed should be seen as a safe alternative to formula feeding for children unless there is a clinical contraindication.

Limitations: The target sample for children in workstream 1 was not achieved. The observational study design means unmeasured confounding may still be an issue. Children in this cohort had been on their home-blended diets for different periods of time. A lack of good reference data for nutritional and anthropometric data for disabled children does hinder further interpretation of nutritional adequacy.

Future work: Future research on: impact of a home-blended diet on the gut microbiome in children who are gastrostomy fed and equality of access. Children's experiences of living with a gastrostomy, nutritional requirements and quality of life should also be prioritised.

Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 17/76/06.