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Abstract
Introduction Gastro-oesophageal reflux disease (GORD) is a common condition affecting children; characterised by the passage of gastric contents into the oesophagus. This can cause 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% 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 some of these questions are not suitable for children who have cognitive impairment. There are currently no suitable existing clinical tools or outcome measures that can be used to assess the severity of GORD in children with CP and cognitive impairment.
Aims The study aimed to adapt the pre-existing P-GSQ (1) to enable use in evaluating children with CP and GORD. This will allow responses to treatment to be measured and support clinical trials evaluating treatment efficacy.
Methods 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.
Results The 6 children whose parents/carers were interviewed ranged between the ages of 3–15 and were all GMFCS V. Questionnaires were carried out by research staff trained in cognitive interview methods. The questionnaire was modified after each interview via an iterative process (figure 1). Parents/carers reported that it was an acceptable expectation to recall the information about their child over the past 7 days. They felt the questions in the modified P-GSQ related to symptoms that they look out for in their children. There were no questions that made them feel uncomfortable and it was easy to read and understand. Reasons for changing questions included; confusing questions, differing interpretation of questions and responses not applying to their child. Some felt it was difficult to comment on 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 also included a section specifically for home carers.
Summary/Conclusions We have adapted the P-GSQ to improve face validity for children with symptoms of GORD and neuro-disability. This will aid in assessing pharmacological treatments for GORD in children with cerebral palsy(2). Phase two will involve further assessment including test-retest reliability of the finalised questionnaire with 20 parents/carers of children with CP and GORD.
References
Kleinman, Nelson, Kothari-Talwar, Roberts, Orenstein, Mody, Hassall, Gold, Revicki, Dabbous, Development and Psychometric Evaluation of 2 Age-stratified Versions of the Pediatric GERD Symptom and QOL Questionnaires: JPGN 2011;52: 514–522
NICE. GORD: recognition, diagnosis and management in children and young people. Research Recommendations (Clinical Guideline 193) 2015. www.nice.org.uk/guidance/NG1