Did you know that the month of May is when we as feeding therapists build awareness about the diagnosis Paediatric Feeding Disorders (PFD)?
Here in Australia, PFD is relatively unknown while ARFID (which was relatively unknown 5 years ago) is now building momentum.
So what is it? And what is the difference between PFD and ARFID? Keep reading and I will distill the current research into a hopefully easy-to-read blog post for you but if you are a nerd like me, then I will also pop the research links at the end for further reading. Who knew I would one day feel proud to call myself a nerd? But I digress…
What is ARFID?
ARFID stands for Avoidant/restrictive food intake disorder. It was created as a mental health diagnosis for kids who have trouble eating and are at risk of nutritional issues, but don’t have body image problems like those with anorexia and bulimia. The full diagnosis can be found here. Simply put, it refers to children who
- Have had a lot of weight loss or are not growing as they should be
- Their nutritional intake is significantly low
- They may need help with feeding such as a tube or supplements prescribed by a Dietitian
- Mealtimes are stressful for them and their families
What does PFD mean?
PFD stands for Paediatric Feeding disorder and was formalised as a diagnosis in 2019 to cover feeding problems that impact four different areas: medical, nutrition, feeding skills, and/or psychosocial. Simply put, it refers to children who
- Are not eating what is typical for age in terms of types of food (nutrition) or amount (volume)
- They have motor or muscle difficulties with eating or drinking e.g., often gagging or choking
- The child has a history of feeding challenges
- These difficulties impact their growth and/or nutrition which may require tube feeding and supplements.
- Mealtimes are stressful for the child and their families
The underlying reasons causing PFD are a range of things (impacting the 4 areas in the diagram below). To help make this simpler, this can be physical issues (such as medical diagnosis) or developmental concerns impacting their muscle tone (e.g., chewing, swallowing, or gross/fine motor skills) or sensory preferences that influence how your child eats/drinks (or what they eat/drink) or a combination of these.
PFD supports a multidisciplinary team approach which means your medical and therapy team working together for both the diagnoses and therapy plan. The diagnosis itself has 2 subcategories: acute and chronic but specific to this blog post, PFD is seen as the broader umbrella with a smaller subset of those kids, also having ARFID. What you might feel now is what we all feel – there is some overlap between the 2 diagnoses which can make it tricky.
What should I do now?
If you are a caregiver of a child with feeding difficulties, then please click this link which will take you to Feeding Matters, a global organization that supports and advocates for families with children who have PFD both in an education and research space.
This second link from Feeding Matters also details the areas that PFD can impact (if you think this diagnosis may be applicable to your child) because the summary above has been written to make it easy to understand but as with all diagnoses, it’s a bit more complicated and much more detailed.
How does getting this diagnosis change things for my child?
Well firstly, it will help you realise that you are not to blame for your child’s feeding difficulties and that your child is not being “behavioural” because food is hard for them and they are trying their best.
Unfortunately in Australia, having ARFID or PFD will not change anything in terms of funding … for now. But we are following this very closely because we would love for it to be recognized by all medical and allied health professionals but also government bodies and ultimately become listed as a funding item across health and disability documentation. Then it will make a funding difference for your child.
Who diagnoses these terms and where are they listed? (documentation stuff):
- ARFID is detailed in a diagnostic manual called DSM-5-TR and diagnosed by a Paediatrician, Psychologist or Psychiatrist. It still isn’t eligible for any funding here in Australia with private health, medicare, or NDIS.
- PFD is diagnosed jointly by your child’s medical and allied health team. It is listed in the International Classification of Diseases (ICD11), a global medical classification system maintained by the World Health Organisation (WHO) which directs and coordinates health within the United Nations.
- ICD has added PFD diagnostic codes (R63.31, acute PFD (present for less than three months), and R63.32, chronic PFD (present for three months or more) which is one step closer to recognition within health services.
So what are you at Let’s Eat! doing about this?
As registered and certified speech pathologists, we cannot diagnose ARFID which incidentally is a lifelong diagnosis. While we recognize that many kids on our caseload currently meet the PFD diagnosis and possibly a smaller subset, meet ARFID, we are keeping our finger on the pulse with the assessments that need to be considered for PFD diagnosis. We are also working collaboratively with our psychology colleagues to support the ARFID diagnostic procedure for the clients we feel meet this criteria.
If you are a current client of ours, then you will already know that we use standardized caregiver-based assessments (on top of our clinical assessments) and cite the research in your reports to advocate for your child. This is currently seen as best practice for PFD and I’m so proud to see how clear and evidence informed our assessments and interventions are.
Jumping into diagnosing children with PFD now without more information, will mean that everyone is diagnosed with it (i.e., 100% of our caseload) and then the diagnosis itself becomes less important. We want to be able to truly determine from a multidisciplinary context (i.e., working together with your child’s dietitian, OT, Psychologist/mental health social worker,r and medical doctors) that your child meets these criteria.
Does it change what we do for intervention? Short answer is no. Using a responsive feeding therapy approach within a multidisciplinary model is already seen as best practice in supporting all the domains of feeding difficulties for your child whether they have feeding difficulties, ARFID or PFD.
What we are also doing is ensuring our knowledge continues to remain up to date with monthly journal clubs where we review the latest published work in the area and continual professional development for paediatric feeding. At Let’s Eat! Being nerds is welcome so our communication chat group is filled with discussions about the latest research and conference sharing of information which is inspiring to see as the business owner.
Hope this has helped you understand an area that is growing in our field and I look forward to sharing as more research comes out (and sharing my own research that is published too!). If you are a current Let’s Eat! client, ask your therapist for our ARFID vs PFD caregiver handout which covers this information in more detail that you can use to discuss further with your doctors and funding organisations.
Until next time, wishing you enjoyable mealtimes with your child
Val Gent
Let’s Eat! Feeding Therapy owner and director
BAppc. (Speech Pathology), MMedRes, PhD candidate
For more information about PFD and ARFID, look up these references:
Christian, V. J., Van Hoorn, M., Walia, C. L. S., Silverman, A., & Goday, P. S. (2021). Pediatric Feeding Disorder in Children With Short Bowel Syndrome. J Pediatr Gastroenterol Nutr, 72(3), 442-445. https://doi.org/10.1097/mpg.0000000000002961
Eddy, K. T., Harshman, S. G., Becker, K. R., Bern, E., Bryant-Waugh, R., Hilbert, A., Katzman, D. K., Lawson, E. A., Manzo, L. D., Menzel, J., Micali, N., Ornstein, R., Sally, S., Serinsky, S. P., Sharp, W., Stubbs, K., Walsh, B. T., Zickgraf, H., Zucker, N., & Thomas, J. J. (2019). Radcliffe ARFID Workgroup: Toward operationalization of research diagnostic criteria and directions for the field. Int J Eat Disord, 52(4), 361-366. https://doi.org/10.1002/eat.23042
Estrem, H. H., Pados, B. F., Thoyre, S., Knafl, K., McComish, C., & Park, J. (2016). Concept of Pediatric Feeding Problems From the Parent Perspective. MCN: The American Journal of Maternal/Child Nursing, 41(4), 212-220. https://doi.org/10.1097/nmc.0000000000000249
Estrem, H. H., Park, J., Thoyre, S., McComish, C., & McGlothen-Bell, K. (2022). Mapping the gaps: A scoping review of research on pediatric feeding disorder. Clinical Nutrition ESPEN, 48, 45-55. https://doi.org/10.1016/j.clnesp.2021.12.028
Goday, P. S., Huh, S. Y., Silverman, A., Lukens, C. T., Dodrill, P., Cohen, S. S., Delaney, A. L., Feuling, M. B., Noel, R. J., Gisel, E., Kenzer, A., Kessler, D. B., Kraus de Camargo, O., Browne, J., & Phalen, J. A. (2019). Pediatric Feeding Disorder: Consensus Definition and Conceptual Framework. Journal of pediatric gastroenterology and nutrition, 68(1), 124-129. https://doi.org/10.1097/MPG.0000000000002188
Henningfeld, J., Lang, C., Erato, G., Silverman, A. H., & Goday, P. S. (2021). Feeding Disorders in Children With Tracheostomy Tubes. Nutrition in clinical practice, 36(3), 689-695. https://doi.org/https://doi.org/10.1002/ncp.10551
Kovacic, K., Rein, L. E., Szabo, A., Kommareddy, S., Bhagavatula, P., & Goday, P. S. (2020). Pediatric Feeding Disorder: A Nationwide Prevalence Study. The Journal of Pediatrics. https://doi.org/10.1016/j.jpeds.2020.07.047
Sharp, W. G., Jaquess, D. L., Morton, J. F., & Herzinger, C. V. (2010). Pediatric Feeding Disorders: A Quantitative Synthesis of Treatment Outcomes. Clinical Child and Family Psychology Review, 13(4), 348-365. https://doi.org/10.1007/s10567-010-0079-7
Sharp, W. G., Silverman, A., Arvedson, J. C., Bandstra, N. F., Clawson, E., Berry, R. C., McElhanon, B. O., Kozlowski, A. M., Katz, M., Volkert, V. M., Goday, P. S., & Lukens, C. T. (2022). Toward Better Understanding of Pediatric Feeding Disorder: A Proposed Framework for Patient Characterization. Journal of pediatric gastroenterology and nutrition, 75(3), 351-355. https://doi.org/10.1097/mpg.0000000000003519
Sharp, W. G., Volkert, V. M., Scahill, L., McCracken, C. E., & McElhanon, B. (2017). A Systematic Review and Meta-Analysis of Intensive Multidisciplinary Intervention for Pediatric Feeding Disorders: How Standard Is the Standard of Care? The Journal of Pediatrics, 181, 116-124.e114. https://doi.org/10.1016/j.jpeds.2016.10.002
