ARFID care in a virtual world

Presented by:

  • Elisha Contner Wilkins, MS, LMFT, CEDS-S
  • Cathryn B. Williams, RD, LD, CSP

Avoidance/restrictive food intake disorder (ARFID) is an eating disorder characterized by highly selected eating habits, typically driven by negative psychological associations with certain foods and eating. 

ARFID is not as clearly understood as some other eating disorders. However, the recent reclassification of ARFID in the DSM-V as an eating disorder as opposed to a feeding disorder opens up more treatment options.  

ARFID overview

The term ARFID was introduced to account for patients who struggle with impaired and distressing eating symptoms and behaviors but who lack body image-related concerns associated with anorexia nervosa (AN) and bulimia nervosa (BN). 

Diagnostic criteria of ARFID

The previous diagnosis of  ARFID relied on the presence of weight loss or failure to gain weight, failing to account for clients that may stay adequately nourished thanks to enteral feeding or oral nutritional supplementation. Plus, the diagnostic category was restricted to children aged 6 and under and emphasized the negative interactions between child and caregiver.1

However, these criteria did not account for the subset of adolescents and adults who displayed feeding issues but didn’t meet the diagnostic criteria for AN or BN, which were often categorized as having an eating disorder not otherwise specified. The addition of ARFID to the DSM-5 cleared up much of the murkiness surrounding the diagnosis in this subset, as well as accounted for their need for multidisciplinary treatment. 

According to the DSM-5, ARFID is an eating or feeding disturbance with:2

  • Apparent lack of interest in eating or food
  • Avoidance of food, based on the sensory characteristics
  • Concern about aversive consequences of eating

Plus, clients with ARFID have one of the following:

  • Nutritional deficiencies
  • Dependence on oral or enteral nutritional supplements
  • Significant weight loss, failure to achieve expected weight gain, or stagnant growth
  • Marked interference in psychosocial functioning. 

Epidemiology of ARFID

While more studies are needed to determine the prevalence of ARFID, results from early population studies that:1

  • 5-14% of patients in a pediatric inpatient eating disorder program were diagnosed with ARFID
  • As high as 22.5% of patients in a pediatric day treatment program were diagnosed with ARFID
  • 20-30% of ARFID cases are male

Studies have also shown that those with ARFID are also commonly diagnosed with comorbid psychiatric and/or medical symptoms.1 Most common co-occurring psychiatric comorbidities include anxiety disorders (including obsessive-compulsive and trauma-related disorders) and neurodevelopmental disorders (including ADHD and conduct disorders).3

Those with ARFID are more likely to have a history of:

  • Picky eating
  • Texture or sensory aversion
  • Fear of vomiting or choking
  • Food allergies
  • Abdominal pain or nausea
  • Anxiety impacting eating

Somatic maintenance mechanisms of ARFID include avoiding adverse tastes or textures, pain, nausea, or risk of choking or vomiting.1

Psychological concerns about ARFID

Living with ARFID can have wide-ranging psychological impacts, including:

  • Inability to participate in regular social activities because of their avoidance and restriction
  • Generalized anxiety
  • Isolation, e.g., due to fears of eating in public or around others
  • Social stigma
  • Difficulties at work and school
  • Difficulties in managing emotions
  • Disruption of relationships as a result of issues managing and accommodating eating behaviors

Assessment of ARFID

A multidisciplinary assessment of ARFID is required to determine the right treatment plan for a client, which can include:

  • Medical assessment
  • Nutrition assessment
  • Mental health assessment
  • Speech-language evaluation
  • Occupational therapy evaluation

Psychological/mental health assessment

The psychological assessment of ARFID involves both structured interviews and self-report measures:

Structured interviews

  • Eating Disorder Assessment for DSM-5 (EDA-5): A semi-structured interview designed to assist in assessing a feeding or eating disorder according to DSM-5 diagnostic criteria.
  • Structure Clinical Interview for DSM-5 (SCID-5): This semi-structured interview also looks at various co-morbidities and can help rule out other eating disorders.
  • PICA, ARFID, Rumination Disorder Interview (PARDI): There are four versions of PARDI (carer of 2-3-year-olds, carer of 4-8 years, 8-13 years old, and 14 years old), which helps diagnose and establish eating disorder severity.

Self-report measures

  • Eating Disorders in Youth Questionnaire (EDY-Q): The questionnaire is designed to assess the range, frequency, and severity of behaviors of an eating disorder.
  • Nine-Item Avoidant/Restrictive Food Intake Disorder Screen (NIAS): Assesses avoidant/restrictive eating patterns using a Likert scale.
  • State-Trait Anxiety Inventory (STAI): Assesses anxiety predisposition, which can be helpful as anxiety can prevent clients from engaging in food exposure treatment.

Assessment of maintaining factors

There are three primary subtypes of maintaining factors that drive ARFID behaviors, and a client can have more than one maintenance factor at any one time:4

  • Poor appetite/lack of interest in eating: In some cases, a person may not recognize hunger cues in the way others do, or they can have a poor appetite generally. Some people may have a low interest in eating, or eating feels like a chore, resulting in limited intake.
  • Concerns about the consequences of eating: A distressing experience with food—such as choking, vomiting, or pain—can cause a person to develop anxiety and fear around certain foods and eating. Others can experience more general worries about the consequences of eating, restricting their intake to “safe” foods. 
  • Sensory-based avoidance or restriction: This could be a sensitivity to the taste, smell, texture, appearance, or temperature of certain foods.

Assessing a client’s maintenance factors and any overlap between them is important as it allows treatment to be personalized to the driving factors behind their avoidance and restriction. 

Nutrition assessment

A nutrition assessment provides an opportunity to get more information on the ARFID presentation and how it has physically affected the client. A nutrition assessment typically involves:

  • Anthropometric analysis, i.e., height, weight, growth charts
  • An in-depth history of eating patterns with help from parental insight, e.g., picky eating as a child, acid reflux as a baby. This can provide insight into the onset of ARFID behaviors
  • Gastrointestinal issues that may be influencing intake, e.g., fear of abdominal pain
  • Hydration, as some ARFID clients also restrict their fluid intake
  • Vitamin and mineral deficiencies through lab work and nutrition-focused physical exam
  • Malnutrition criteria assessment, i.e., weight loss, low BMI, not meeting nutritional needs
  • A hierarchy of foods which can indicate where a client is currently in terms of nutrition and help identify future goals

Common nutrient deficiencies

A limited intake of food/limited food variety can result in nutrient deficiencies, including but not limited to:5

  • Calcium
  • Folate
  • Iron
  • Vitamin A
  • Vitamin C
  • Vitamin D
  • Vitamin K
  • Zinc

It’s important to note that a client can be nutrient deficient without the common signs of malnutrition, such as weight loss, low weight, or low fat stores. Furthermore, while a classic lab panel screens for common nutrient deficiency, such as folate, iron, and calcium, other key nutrients like zinc and vitamin K. This is where a nutrition-focused physical exam comes in, which checks for physical signs of deficiency, such as inflamed gums for vitamin C deficiency.

Hierarchy of foods

Assessing a client’s current intake is a useful tool to identify opportunities for exposure. It provides information about when and why certain foods become “unsafe.” Many hierarchies of food tools are available, including a free one in the CBT-AR workbook. 

At Within Health, we use a “Food Preference List,” which includes an extensive, descriptive list of foods to assess current intake and interest in food to include in exposure therapy. This is done in registered dietitian sessions, care partner sessions, or independently. 

Treatment modalities of ARFID

The goals of treatment of ARFID are as follows:

  1. Achieve or maintain a healthy weight
  2. Correct any nutritional deficiencies
  3. Eat foods from all five basic food groups and expand the repertoire of food
  4. Feel more comfortable in social situations involving food
  5. Engage in eating experiences that are important to the client’s overall well-being

Therapeutic interventions

There are a wide variety of therapeutic interventions that can be used in the multidisciplinary treatment of ARFID, including:

Initial meal planning for ARFID

While the ultimate nutrition goal for ARFID treatment is for a client to eat food from all food groups and expand on the foods they consume, the initial goal for meal planning is getting enough energy:

  • Increase portions of safe foods to meet estimated nutritional needs
  • Increase intervals of eating occasions
  • Assess the needs for dietary supplements and vitamin/mineral supplementation as needed
  • Adequate hydration
What's missing on my plate?
Thomas, J. J & Eddy K. T, 2019

Exposure therapy

This evidence-based treatment modality is designed to treat phobias, fears, and anxieties, which breaks the cycle of fear and gradually exposes the client to fear in a controlled, monitored manner. This can start by simply sitting with the food, building up to eating the food. 

The Subjective Units of Distress Scale (SUDS) is used throughout exposure therapy to rate the amount of anxiety a client is feeling. It’s like a thermometer that measures how “hot” anxiety gets and helps determine what helps “cool” it.

One method of exposure therapy is incorporating new foods, which can involve:

  • Food chaining, i.e., incrementally working up from a “safe” food to an “unsafe” food, e.g., from a chicken nugget to a chicken breast
  • Increasing the quantity of preferred foods and slowly increasing the amount of novelty food on the plate
  • Adding new spices, sprinkles, and condiments
  • Changing up the presentation of foods

CBT-AR

A specialized form of cognitive behavior therapy for ARFID, CBT-AR is typically delivered on an outpatient basis over 20-30 sessions. It consists of 4 modules:7

  1. Psychoeducation about ARFID
  2. Psychoeducation about nutrition deficiencies and selection of novel foods
  3. Select modules based on subtypes: in-session exposure and homework practice
  4. Relapse prevention plan

While more research is needed, early studies indicate that CBT-AR is a feasible treatment for ARFID. A 2020 study by Thomas et al. found that following CBT-AR, the underweight subgroup showed a significant weight gain, and 70% of patients no longer met the criteria for ARFID.7

Support for parents and loved ones

Family and loved ones form an important part of ARFID treatment. The goals of supporter involvement in treatment are to:

  • Provide psychoeducation, such as information on nutrition philosophy, treatment approaches, co-occurring disorders, and maintenance drivers
  • Assess strategies at home and problem-solve ways to provide a positive environment at mealtimes
  • Reduce conflict at home and stress at mealtimes, and increase support
  • Assess and provide distress tolerance strategies
  • Review the validation sequence and create reward systems for mealtimes
  • Troubleshoot at-home experiences

Treatment at higher levels of care

Intensive treatment is effective in reducing ARFID symptoms in clients, and it allows access to a multidisciplinary team. 

Benefits of virtual treatment

It’s estimated that only 20% of those living with eating disorders can access traditional treatment.8 There are many barriers affecting access to treatment, which include geographic and financial barriers, lack of inclusions, long waiting lists, and more. Virtual treatment can help overcome many of these barriers, as well as offering many other benefits, including:

  • Effective treatment at home
  • Ability to observe the client/caregiver in the setting where disordered eating behaviors occur
  • Opportunity to observe accommodations that may reinforce the client’s behavior
  • Increase control of exposure opportunities
  • More family involvement and opportunities to teach caregivers
  • Ability to plan exposure when it’s most convenient for the client
  • Meals with other ARFID clients
  • Immunocompromised patients are protected

Cons of virtual treatment

There are some setbacks to virtual treatment, which may include:

  • Exposures are not the same every day, i.e., not carried out under consistent conditions
  • The clinician is unable to see the full body experience during the exposure
  • Loss of internet connection
  • A client may be distracted by their image on the screen
  • Privacy concerns

ARFID treatment at Within Health

Within Health offers multidisciplinary treatment for ARFID in a virtual setting, which includes:

  • Assessment protocols
  • Movement/activities/somatic experiences
  • A team approach to exposure opportunities
  • Individualized nutrition support
  • ARFID process group
  • CBT/CBT
  • Support group for loved ones
  • Creation of a sensory environment
  • 1:1 sessions with care partners
  • Support for the clinical team

Individualized nutrition support

Nutrition support can help clients repair their relationship with food and gradually increase the quantity and variety of food. Elements of individualized nutrition support include:

  • Supported meals with trained care partners
  • One-on-one food exposure with a registered dietitian at least twice a week (when appropriate)
  • Food delivered to a client’s home based on individual preferences and exposures
  • One-on-one cooking exposures with a chef
  • Meal logs for registered dieticians to review exposures and eating experiences outside the program.

Movement protocol

All ARFID clients at Within Health have a one-to-one assessment with a movement specialist, which includes evaluating current levels of physical activity and developing movement goals. The Within Health movement protocol has four phases:

  • Courage: Clients are encouraged to participate in passive stretching to reduce stress on the system.
  • Determination: Clients engage in up to 30 minutes of gentle movement, including mindful walking, gentle yoga, leisurely bike rides, foundational pilates, or a functional body weight circuit at a frequency determined by the treatment team.
  • Perseverance: Clients engage in up to 60 minutes of movement, e.g., 30 minutes of resistance and 30 minutes of aerobic exercise or a 60-minute yoga class.
  • Empower: Exercise is customized to support the client’s vision of what movement looks like in their recovered life.

Creating a sensory environment

Creating the ideal sensory environment is always individualized to the client’s needs and preferences, but can include:

  • Sitting down for a meal
  • Using distractions, such as pets or TV, that are supportive of the meal experience
  • Turning on soothing, enjoyable music
  • Using coping tools
  • Determining subjects that should be avoided at meal times
  • Family education of division of responsibility

The Within Health ARFID protocol has been put together using both what has been found in the literature and their client’s loved experiences, including their ongoing feedback.

Resources

  1. Norris, M. L., Spettigue, W. J., and Katzman, D. K. (2016). Update on eating disorders: current perspectives on avoidant/restrictive food intake disorder in children and youth, Neuropsychiatric Disease and Treatment, 12, 213-218.
  2. Diagnostic and statistical manual of mental disorders: DSM-V (Vol. V). (2013). American Psychiatric Association.
  3. Kambanis, P. E., Kuhnle, M. C., Wons, O. B., et al. (2020). Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder. International Journal of Eating Disorders, 53, 256–265.
  4. ARFID. (n.d.). Beat Eating Disorders. Accessed Nov 2023.
  5. Thomas, J. J., Becker, K. R., & Eddy, K. T. (2021). The Picky Eater's Recovery Book: Overcoming Avoidant/Restrictive Food Intake Disorder. Cambridge University Press.
  6. Rowell, K., and McGothlin, J. (2015). Helping your child with extreme picky eating: A step-by-step guide for overcoming selective eating, food aversion, and feeding disorders. New Harbinger Publications. 
  7. Thomas, J. J., Becker, K. R., Kuhnle, M. C., Jo, J. H., Harshman, S. G., Wons, O. B., Keshishian, A. C., Hauser, K., Breithaupt, L., Liebman, R. E., Misra, M., Wilhelm, S., Lawson, E. A., & Eddy, K. T. (2020). Cognitive-behavioral therapy for avoidant/restrictive food intake disorder: Feasibility, acceptability, and proof-of-concept for children and adolescents. The International Journal of Eating Disorders, 53(10), 1636–1646. 
  8. Steinberg, D., Perry, T., Freestone, D., Bohon, C., Baker, J. H., and Parks, E. (2023). Effectiveness of delivering evidence-based eating disorder treatment via telemedicine for children, adolescents, and youth. Eating Disorders, 31(1), 85-101.