Title: A mixed methods study investigating complications, outcomes and family experiences of gastrostomy feeding in paediatric allogenic bone marrow transplantation.
Funder: Health Education England

Abstract: Background Bone marrow transplant (BMT) is the only curative treatment for children with malignant and non-malignant diseases. Chemotherapy provided during BMT causes side-effects including diarrhoea and vomiting meaning all children become unable to eat and require tube feeding. All 17 UK centres use a nasogastric tube, but two offer families an alternative; a gastrostomy. Minimal published literature exists on gastrostomies in this population.Aims Investigate complications, outcomes and family experiences of gastrostomy feeding in paediatric BMT. Objectives Survey current practice, attitudes and barriers towards gastrostomy feeding in UK BMT centres. Compare clinical outcomes and complications occurring from gastrostomy versus nasogastric tubes in children during BMT. Investigate decision making and experiences of families who chose a gastrostomy.Methods A multiphase, convergent parallel mixed methods study has been designed across four work packages (WP).1. Survey A survey will be sent to a dietitian, nurse and consultant (the staff involved in tube feeding) in each UK paediatric BMT centre. Questions will focus on current practice, attitudes and barriers towards using gastrostomies. Results will guide WP 2-3.2. Prospective cohort study Outcomes will be compared between children fed via gastrostomy versus nasogastric tube from admission to six months post-BMT. All children transplanted over 1.5 years at one centre will be included. Outcomes including complications occurring with both tubes, dietary intake and growth, using a potentially more accurate new method not routinely used in clinical practice; mid-upper-arm-circumference, will be investigated. Anticipated sample size is 9-15 children fed via gastrostomy, 30-50 via nasogastric tube. 3. Family interviews Every family that had a gastrostomy during WP 2 will be invited to be interviewed at two times; before admission to discuss why they chose a gastrostomy, and one month after discharge to discuss their experience of the gastrostomy. Approximately 4-11 children aged 4 years and over and 6-15 main carers will be interviewed. Creative methods including drawing and journals will be used during children's interviews to help them articulate their thoughts. Adults will take part in semi-structured interviews.4. Educational materials Results from WP 2-3 will be used to create an evidence-based storybook telling the story of a child fed by gastrostomy and another by nasogastric tube. Timeline This study will be conducted over three years. WP 1 will be completed between months 1- 10, WP 2-3 jointly between months 10-29, and WP 4 between months 23-31.Impact This study will produce new evidence regarding complications, outcomes, decision making and experiences of families regarding gastrostomies throughout BMT. If gastrostomies are shown to be safe and acceptable they could be offered to families in other centres. The storybook will be used during pre-admission consultations allowing families to make more informed decisions when choosing feeding tubes. Recommendations will be made for gastrostomy use and future multicentre research which should include economic evaluation.Dissemination Results will be presented at local, national and international meetings and articles submitted to peer-review journals. Audiences will include parent groups and dietitians, nurses and doctors who are involved in nutritional support of these children.

Lay abstract: Aims Explore the views of staff that work in bone marrow transplant (BMT) towards tube feeding (a liquid form of nourishment delivered to the body through a tube). Compare clinical outcomes and complications occurring from two different feeding tubes in children during BMT. Investigate families decision making and experiences of tube feeding during BMT.Background Annually, approximately 310 children in the UK need a BMT to treat diseases including leukaemia. Great Ormond Street Hospital (GOSH) is the largest of 17 UK hospitals doing 70 BMTs annually on children aged 1-13 years. Hospital admissions for BMT last 2-6 months and start with the child having chemotherapy. This causes side-effects, including sickness and diarrhoea, meaning all children become unable to eat and need tube feeding. Two UK hospitals, GOSH and Manchester, offer families a choice between one of two feeding tubes during meetings before admission. One is placed through the child's nose, down their throat and into their stomach (a nasogastric tube), the other is placed surgically from outside to inside the stomach (a gastrostomy). Other hospitals only use nasogastric tubes. Currently we have little understanding of: Why only two NHS hospitals insert a gastrostomy? Why families choose a gastrostomy? What complications occur with both tubes throughout BMT? Whether one feeding tube leads to better outcomes? What are families experiences of having a gastrostomy?Better understanding of these unanswered questions will improve care and families' decision making when choosing feeding tubes. If gastrostomy feeding is found to be safe and acceptable this could be offered to families in all hospitals. Methods Four complementary work packages using different methods:1. Survey A questionnaire will be sent to each UK hospital performing BMT in children. A reply will be requested from a dietitian, nurse and doctor in each hospital; the staff involved in tube feeding. Questions will focus on current practice, attitudes and barriers towards using gastrostomies. Answers will be assessed for common issues and used to guide work packages 2-3.2. Outcomes Outcomes will be investigated for all children over 1.5 years at GOSH, from admission to six months after BMT. Outcomes including any complications with the feeding tubes, dietary intake and growth will be compared between 9-15 children fed via gastrostomy versus 30-50 via nasogastric tube. Results will provide information about how well each tube supports feeding and growth. 3. Interviews Interviews with 4-11 gastrostomy fed children (aged 4 and above) and 6-15 main carers will occur twice; before admission, to discuss why they chose a gastrostomy, and one month after discharge to discuss their experience of the gastrostomy. Creative methods including drawing and journals will be used to help children explain their feelings. 4. Storybook A storybook will be created to share findings, telling the story of a child fed by gastrostomy and another by nasogastric tube. This will help families make better decisions when choosing a feeding tube before admission.Patient and public involvementFocus groups and interviews were held with dietitians, parents and children with experience of gastrostomies and nasogastric tubes. More research about gastrostomy feeding was reported as a priority. Two parents and numerous staff, including a gastrostomy nurse, play specialist and psychologist, have agreed to be part of the project advisory group that will meet throughout this study to support its conduct.DisseminationResults will be shared through presentations at professional and lay meetings and conferences, and publications submitted to BMT journals. Audiences at conferences and readers of journals will include dietitians, nurses and doctors who are all involved in tube feeding. The storybook will be distributed to families before admission.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE