Falling Through the Cracks: UK Health Professionals’ Perspective of Diagnosis and Treatment for Children and Adolescents with Avoidant/Restrictive Food Intake Disorder

Abstract

ABSTRACT Background Avoidant/restrictive food intake disorder (ARFID) describes an eating disturbance associated with weight loss or faltering growth in children, significant nutritional deficiency, reliance on oral supplements, reliance on enteral feeding and/or a clear interference with psychosocial functioning, in the absence of body image concerns. Seven years on from the introduction of the diagnostic criteria for ARFID anecdotal evidence suggests that health practitioners struggle to identify, diagnose and treat ARFID effectively. This study systematically investigates and categorises the different barriers to effective healthcare for children with ARFID, from the perspective of those who encounter and care for these children in their professional practice. Method A mixed methods online survey containing closed and open questions sought to gather information about paediatric healthcare for ARFID. Forty-five primary and secondary health-care professionals (HCPs) from 7 disciplines took part, providing information regarding their confidence in the identification and diagnosis of ARFID but also their confidence in making appropriate onward referrals and any barriers to effective healthcare for this patient population. Results The findings suggested that participating primary HCPs struggle to identify children with ARFID and if they do, they do not necessarily know who to refer these children to for assessment, diagnosis and support. Participating secondary, or specialist, HCPs felt more confident in their ability to identify a child with ARFID, but were similarly unsure about onward referrals. HCPs identified lack of professionals’ knowledge and training and a lack of clear pathways or specific services as barriers to effective diagnosis and treatment for this clinical group. Conclusion This study highlights the need for education and training for primary HCPs and the need for well-coordinated, multidisciplinary, ARFID-specific care pathways which can appropriately manage assessment, diagnosis and support of this often complex clinical group.