Title: What interventions, which could be delivered at home by parents, are available to improve eating in young children with neurodisability and are suitable for investigation in pragmatic trials?
Funder: Department of Health and Social Care

Abstract: Design: Focus groups. Surveys. Updating systematic reviews, Evidence mapping, synthesis. Delphi survey. Consensus meetings Setting: NHS and community services, family homes, education settings. UK parent and professional groups Current care pathways: Interventions for Eating, Drinking and Swallowing Difficulties (EDSD) which young children currently receive Strategy for reviewing literature: Update 3 recent systematic reviews about interventions: Evidence mapping to identify potential interventions, outcomes and measurement tools, incorporating findings from other reviews. Examine properties of frequently used and most valued tools to measure outcomes Target population: Young children with physical or non-physical EDSD (age to be identified during project) Inclusion criteria: Young children with neurodisability and EDSD. Exclusion criterion: progressive neurodisability Health Technologies being assessed: Interventions to improve EDSD in young children with neurodisability Measurement of costs: No health economic study will be undertaken Sample size: Identifying current interventions: 4 focus groups (six participants each): 1 for parents of young children with physical EDSD; 1 for parents of young children with non-physical EDSD (12 parents). 1 for professionals of young children with physical EDSD; 1 for professionals of young children with non-physical EDSD (12 multidisciplinary professionals). Survey: Through parent and professional networks. 200 UK parents; 100 nursery/school staff who feed children with EDSD, 200 NHS professionals who work with children with EDSD Sample size for trial frameworks and specification: 12 focus groups (6 participants each): 2 for parents of young children with physical EDSD; 2 for parents of young children with non-physical EDSD (24 parents). 2 for professionals of young children with physical EDSD; 2 for professionals of young children with non-physical EDSD (24 professionals). 2 for young people with physical EDSD; 2 for young people with non-physical EDSD (12 young people). Delphi survey: 100-200 respondents. 2 consensus workshops: 10 parents and 10 professionals at each Deliverables: Identification of: NHS treatments available for children with physical and non-physical EDSD; the most promising interventions and specification of the patient groups in whom the intervention(s) should be tested, including whether exemplar conditions should be used in a trial; what ‘treatment as usual’ comprises, and its acceptability; selection of the key outcomes and recommendation of the measurement tools. A suggested framework and outcomes for one or more substantive pragmatic trial(s). The research team is multidisciplinary and involves clinicians, researchers and a parent from Newcastle, London, Sussex and Exeter. An external advisory group and parent group will guide the team during the research. The team will work with a variety of UK partners to conduct this study.

Lay abstract: Young children with developmental difficulties may also have eating, drinking and swallowing problems. We want to find out how they are currently offered help by NHS services. We then want to gather information in order to plan a future study of one or more potentially worthwhile treatments. Long-term conditions in children affecting the brain, nerves and muscles are often grouped under the term ‘neurodisability’. Difficulties with eating and drinking are common in young children with neurodisability. Eating and drinking difficulties may lead to a restricted diet, poor growth, and impact on development, in addition to general physical health risks such as choking or chest infections. The difficulties may also create stress at mealtimes that can affect wider aspects of family life. Some young children have mostly physical difficulties; for example, those with cerebral palsy may find chewing and swallowing problematic. Other young children have mostly sensory difficulties, such as extreme sensitivity to lumpy food, or difficulties associated with not wanting to eat or making faddy choices, such as in children with autism. Some children have combinations of difficulties. A team of health professionals usually works with parents and carers of young children with eating and drinking difficulties. The professionals identify the cause of the child’s difficulties and suggest to parents how eating and drinking might be improved. This could include adjusting posture, reducing the child's sensitivity to certain textures, using medication, or special equipment. The treatments suggested depend on the cause of the child’s difficulty. As we do not have strong evidence on whether the treatments suggested by professionals actually work, we need to conduct careful research to understand whether they are effective. However, before doing these studies we need to know which treatments are regularly recommended, which types of improvement in eating and drinking are considered most important by parents and professionals, and how best to measure a child’s progress. This will help us to decide which treatments should be tested in a future study and how to assess whether they work. Using discussion groups and surveys with parents and professionals, we will find out the different treatments recommended for young children with eating and drinking difficulties and how acceptable they are to parents. We will also ask how we should measure improvements in a child’s eating and drinking and other related areas that are important to families; and how long after the treatments have been started we should assess success. Then we will examine the published research literature to see what is currently known about the effectiveness of treatments people think could be important. We will combine all the information to identify whether there are treatments that would be worth investigating further, and how best to measure children’s progress with eating and drinking. We will meet again with parents and professionals, and meet young people who have experienced eating and drinking difficulties, to see whether we can agree how to test treatments in further research. Finally we will make recommendations about how future studies should be designed and conducted.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: MENTAL HEALTH;NEUROLOGICAL;ORAL AND GASTROINTESTINAL