Developing Arfid Pathways for children and young people from evidence to practice- 20th May 2026 Edinburgh Road Show

 

Dr Josephine Neale- Consultant Child Psychiatrist

Professor Dasha Nicholas Child Psychiatry

Dr Lee Hudson Paediatrician UCL Great Ormond Street

 

Recent Arfid roadshows London, Bristol, Dublin

Webinar on 17th June to update on progress

MRC funded research carried out by above team since 2018 on new diagnoses of Arfid in children aged 5-17.

Age over 5 was chosen to allow for the developmental stage of fussy eating to pass.

New cases were reported to BPSU and CAPSS (psychiatry equivalent) and recorded for the research via electronic monitoring cards.

Previously NICE excluded Arfid from its guidance but this is now being reconsidered.

Very poor dataset before this research- mainly Canadian data on Arfid prevalence.

Overall it is felt the figures are an underestimation- as in all studies tends to be under reporting plus impact of covid etc.

Incidence rate- number of new cases rather than prevalence total cases at one point in time was looked at.

For this time period there were 319 new Arfid cases- incidence rate of 2.79 per 100,000. In keeping with speculated figures- and Canadian figures- low incidence but high complexity.

BPSU is paeds recorded - 189 cases

CAPSS ie CAMHS reported 130 cases

Only 4 came as jointly referred

Paeds cases tended to be younger, male and autistic and more chronic with more dietetic advice, supplements and nutritional testing. CAMHS cases had more psycho education and individual therapy. Their cases tended to be older, more issues with fear of choking, anxiety and higher rate of females. Overall outcomes after a year showed all improved in nutritional status however CAMHS had better outcomes at review in a year compared to Paeds. Eating distress reduced at a higher rate in CAMHs group. Therefore, medical and mental health support needed for intervention.

All notifications came from secondary care- primary care was not looked at.

Overall spread across genders was roughly equal. Mean age 11.

Co-morbidities - 50 per cent anxiety, 50 per cent ASD, 20 per cent LD and 7 per cent ADHD.

In terms of management 80 per cent had dietician input. Medical management 66 per cent and psychoeducation in 50 per cent.

10 per cent were inpatients in both CAMHS and Paeds.

 

Subtyping of Arfid may guide pathways/ management

Arfid subtypes

 

Combined ( lack of interest and sensory) 38 per cent - felt to have high association with asd and LD. This group has the highest level of food exclusion.

Lack of interest 25 per cent - felt to present at older age of diagnosis, low appetite, weight loss common.

Sensory 29.5 per cent- high for ASD. Texture, brand sensitivity.

Fear- 7.2 per cent- related to anxiety around choking, being unwell, vomiting. Higher prevalence in females.

 

Dr Lee Hudson

Medical management of Arfid

Psychological interventions work well in Arfid- if young person is in place to do this work it should be offered ( generally over age of 6). Anxiety element in Arfid benefits from intervention- not every Arfid child will need this input.

Dr Hudson noted that medical admissions for children to acute paeds generally ward had increased by 66 per cent from 2012 to 2022. He feels part of this is related to diet, obesity and neurodivergence. Longer stays are also observed. Hospitals are absorbing what community can’t deliver. Often children with Arfid are discharged in a worse state and are traumatised.

 

Main points he wanted to stress

 

1. Arfid is a complex medical condition affecting multiple systems not just weight.

2. Healthy weight does not equal health in Arfid. Obesity can also be a problem in Arfid.

3. Medical risk may be under diagnosed, monitoring is inconsistent and may not be aligned with risk. Importance of pulse and BP checks stressed in children with significant weight loss. Not as significant as in eating disorder children but still should be considered.

Commonest nutrient deficiency is iron- which can lead to cognitive decline/ headaches.

He stressed that Arfid can present with significant physical risk even when not visible or obvious.

50 per cent of children with Arfid present 1 or more deficiency - commonest iron but also seen are vit D, B12, Vit C. Severe cases of deficiency include blindness for Vitamin A deficiency and scurvy and rickets for Vitamin C deficiency. Severe case of scurvy with pulmonary hypertension in 2 children that was completely reversed with Vitamin C supplementation.

A major concern for parents is what is going on internally for their children. Parents feel they have sole responsibility for monitoring this and this causes lots of stress understandably.

Faltering growth in 5-50 percent of cases but statistical trajectory analysis may be okay.

Short duration of illness is related to rapid weight loss and can lead to cv compromise but this is rare. Longer duration increased risk of nutritional diffs.

Sensory profile felt to have more nutritional deficiencies

Fear profile has higher rate of weight loss.

 

Acute physical risk

cv compromise uncommon - more common in eating disorders. Present in about 10 per cent of Arfid cases.

Can have electrolyte imbalance / dehydration.

 

 

Chronic risk

Pubertal delay

Amenorrhoea -10 per cent of Arfid cases

Decreased bone density as bone density is built up in first 20 years of life. 30 per cent have low bone mineral density.

Type 2 diabetes

GI symptoms- constipation 20-40 per. Abdominal pain 20 per cent of cases. This can reduce eating further.

Obesity and related risks - high bp, diabetes, fatty liver and heart disease long term

Cognitive diffs- concentration/mood

Skin, hair, dental, energy levels and mental health/ social outlook

 

 

Take away points from Paediatrics perspective

Provide routine medical review of Arfid pts can be done by GP-not all need Paediatrics

Look beyond weight alone

Act and listen to parental concern

Early intervention to prevent severity and chronicity

 

What are parent’s experiences of medical input for their Arfid children

Figures presented by Arfid awareness uk

50% of families were initially dismissed by health care professional - range of professions

50% of families still awaiting formal Arfid diagnosis

43% of families report no support, no review and no psychological al input post diagnosis

46% of families found out about Arfid from their own research

When asked what would have made a difference to their experience parents report

earlier diagnosis

Early intervention

Feeling believed / validated by professionals they encountered

Access to psychoeducation and therapy earlier including for young children who are often not able to access psychological therapy

Difficulty with transition to adult services

For professionals to be aware that wrong advice/ input can be harmful

Parents sometimes cannot take the risk of a supplement being added to food when a child eats only 2 foods

Professionals need to work with parent to do find best solution and maybe part of accepting child maybe deficient but risk of losing a food is worse

To be aware of the impact on the whole family

Tube feeding saves lives - should probably be considered sooner in most cases

 

 

www.arfidawareness.org.uk 

Arfid life UK- Michelle Jacques- 3 mums 1 mission Arfid Podcast

beat support service- www.beateatingdisorders.org.uk

Alfie Anthony Nichols- died from malnutrition secondary to Arfid despite his mother's many attempts to access care for him- Serious case review with recommendations made 

• Alfie’s rainbow steps to eating formulated by his mother for use in schools

Nice guidelines eating disorders- at next review Arfid will be considered due to need for greater evidence base.

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