Development and evaluation of a questionnaire for feeding problems and gastrointestinal symptoms in children with Autism Spectrum Disorders and the impact of these problems on family life

Abstract

Managing feeding problems and gastrointestinal (GI) symptoms in children with Autism Spectrum Disorders (ASD) is a challenging process for professionals and parents especially if they become persistent and longstanding. These problems may have psychosocial and financial impacts on family life. To date, there is no structured questionnaire available to assist community professionals to identify these problems in a systematic manner. The primary aim of this research was to develop an interviewer-based questionnaire for community professionals (the ‘Brief structured questionnaire for the Early identification of Feeding problems and GI symptoms in primary school children with ASD (BEFGASD)). The secondary aim was to evaluate the psychometric properties of the BEFGASD. The development process of the BEFG-ASD included a comprehensive literature review, items and scales construction, specialist review, a modified Delphi technique and a pre-testing with professionals and parents. 42 items within 15 sub-domains of feeding problems, GI symptoms and the impact were selected. The panel experts in the Delphi technique (n=20) rated the items as either ‘important’ or ‘very important’ (Mean score: 1.0-2.0). The final draft of the BEFG-ASD was field-tested with 48 professionals and 74 parents of primary schoolchildren with ASD (aged 4-11) in North East England. Responses from the field-testing were used to evaluate the psychometric properties of the BEFGASD. Face validity and content validity was established. Internal consistency of the 42 items was good (Cronbach’s alpha: 0.85) but varied across domains. Test-retest reliability and inter-rater reliability of domains and items was satisfactory. Criterion validity and construct validity of the BEFG-ASD also varied across domains and sub domains. The BEFG-ASD is the first questionnaire developed for use by community professionals. Further research and clinical practice will increase our understanding of its properties and utility in different population and settings.