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

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.

KEYWORDS:

• Eating disorders
• feeding disorders
• avoidant/restrictive food intake disorder
• selective eating
• health-care professionals

Data availability statement

The data that support the findings of this study are available from the corresponding author, AH, upon reasonable request.

Acknowledgements

Study funding: The author received a research training award as part of the Health Education England (HEE) and National Institute for Health Research (NIHR) Integrated Clinical Academic (ICA) Programme which provides healthcare professionals the opportunity to develop careers that combine clinical research with continued clinical practice and this research took place within that time.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Contributorships

Ailish Harrison is the sole author and can confirm full access to all the data in the study and takes responsibility for the integrity of the data in the study and the accuracy of the data analysis.

I would like to thank Dr Rachael Bryant-Waugh for her support and guidance and Dr Judy Clegg for her encouragement in this endeavour.

Ethical approval

Approval for this study was obtained from the London Brent Research Ethics Committee on 5 December 2019 (reference number 19/LO/1810).

I can confirm that there are no relevant financial or non-financial competing interests to report.

Additional information

Notes on contributors

Ailish Harrison

Ailish Harrison is a Senior Specialist Speech and Language Therapist at Sheffield Children's Hospital, currently working as one of the lead clinicians for children with feeding difficulties in the community. With a special interest in children who have selective eating patterns and restricted diets, Ailish has worked to provide training for a range of health, education and social care professionals and runs clinics and parent workshops to support families in this under-developed area of health care.