647 Gastro-oesophageal reflux and neuro-disability in CHILDren: (GRaNDCHILD): modification of the P-GSQ for use in children with neuro-disability

Abstract

<h3>Aims</h3> Gastro-oesophageal reflux disease (GORD) is a common condition affecting children characterised by the passage of gastric contents into the oesophagus. This can cause symptoms such as pain, vomiting and regurgitation. Children with cerebral palsy (CP) are predisposed to more severe GORD due to co-existing gut dysmotility and exclusive/supplementary liquid diet. The incidence of CP is approximately 2:1000 live births and over 50% of these children are estimated to have GORD. For children without CP, the ‘Paediatric Gastro-oesophageal Reflux Disease Symptom and Quality of Life Questionnaire’ (P-GSQ) helps to assess symptoms and response to treatment, but these questions are not applicable or suitable for children with cognitive impairment. There are no existing clinical tools or outcome measures that can be used to assess the severity of GORD in children with CP and cognitive impairment. This study aims to adapt the pre-existing P-GSQ assessment tool to enable use in this patient group. <h3>Methods</h3> Cognitive interviews were conducted with parents/carers of children (aged 2-16) with CP (GMFCS level III-V) who have current or past symptoms of reflux. This included those receiving naso-gastric or gastrostomy feeds. The first phase focused on development of the questionnaire with 6 parents/primary carers by asking them to interpret the questionnaire using a ‘think-aloud technique,’ and offer suggestions on alterations to questions. Reasons for changing questions included confusing/difficult to understand questions, different interpretations of questions by caregivers and response choices not applying to the child in question. Questionnaires were carried out by members of the research team trained in cognitive interview methods. Prior to the questionnaire, a standardised script was read to the participants detailing the purpose of the study to ensure that all parents/caregivers received the same information. <h3>Results</h3> The 6 children whose parents/carers were interviewed ranged from 3-15 years old and were all GMFCS V. The P-GSQ questionnaire was modified after each interview via an iterative process (figure 1). Overall, parents/carers reported that it was an acceptable expectation to recall the information about their child over the past 7 days. They felt that the questions in the modified P-GSQ related to symptoms that they look out for in their children day to day and that they were relevant and useful to parents of children with reflux and CP. There were no questions that made them feel uncomfortable and it was easy to read and understand. Some parents/carers felt that it was difficult for them to comment on the questions surrounding school as they were not with their child during the school day; however, they felt it would be useful for school staff to answer these questions. Suggestions for future work included a section specifically focusing on carers who assist them in the home. <h3>Conclusion</h3> We have adapted the P-GSQ to improve face validity for children with GORD and neuro-disability. This will aid in assessing efficacy of pharmacological treatments for GORD in children with cerebral palsy. Phase two will involve further assessment including test-retest reliability of the finalised questionnaire with 20 parents/carers of children with CP and GORD.