1608 What does their gut say

Background Chronic neurodisability is often associated with a range of Gastro-intestinal issues (GI) and can involve any part of the GI tract. Some issues are promptly diagnosed and managed appropriately. However, others are grossly misunderstood and under recognised. Leading to aggravation of underlying conditions, distress for patient and family and poor overall quality of life. Objectives Study the range of GI problems in cohort of patients with chronic neurodisability in a District General Hospital (DGH). Study range of treatments offered and possible practice variation Study most effective treatments used in cohort Study impact of GI issues on patients and families’ quality of life Methods Twenty patient charts were retrospectively reviewed to compile a list of suitable patients with chronic neurodisability. We classified chronic neurodisability as a group of congenital or acquired long-term conditions that attribute to impairment of the brain and/or neuromuscular system and create functional limitations. Impact may include difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour. Using the list of patients we then contacted the parents via telephone or in person to gather the information. We developed a proforma for our parent discussions to provide a standardised approach as well as a parent information sheet to enable consent. Proforma included asking about GI issues experienced Treatments felt to be most effective Effect of GI issues on patient Effect of GI issues on family An online survey was also created and completed by senior clinical staff to compare clinical view with parental responses. The survey for senior clinical staff included questions on Which GI problems do they encounter How significantly they belief the GI problems affect them Which treatments they find most effective How confident they feel managing GI problems Results Age range for patients was from three months to thirteen years. The most common GI issues experienced were: Constipation swallowing issues GORD Treatments deemed most effective were: PEG insertion PPI use laxatives Quality of life most affected by: poor weight gain device placement and maintenance Pain and discomfort The survey data mirrored proforma information. From the completed surveys 46% respondents stated lack of confidence when managing GI problems in Neurodisability and 100% respondents felt that a formal guidance document would aid the management of these children. Conclusions GI issues have a significant impact on both patients and family’s quality of life. A larger cohort and data is needed in this field and production of a guideline to standardise care would be beneficial. Always remember the importance of treating the child holistically and by managing the simple things well can make a profound difference to the child.