Interdisciplinary Assessment and Treatment of Children with Feeding Disorders. Disclosures - Sharp

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1 Interdisciplinary Assessment and Treatment of Children with Feeding Disorders William Sharp, Ph.D. Director, Children s Multidisciplinary Feeding Program Children's Healthcare of Atlanta Associate Professor, Division of Autism and Related Disorders & Division of Ped. Gastroenterology, Hepatology, and Nutrition Dept. of Pediatrics, Emory University School of Medicine Disclosures - Sharp Employee Children s Healthcare of Atlanta Emory University Research Support Organization for Autism Research (OAR) Children s Foundation 1

2 Learning Objectives Describe the potential contribution of medical and developmental factors in the development of feeding disorders in infants and young children Discuss the prevalence and impact of chronic food refusal on the child and family Identify the current medical solution(s) to addressing nutritional concerns associated with chronic food refusal in pediatric populations Identify effective treatments to increase the volume and expand the variety of foods consumed during meals 2

3 11/12/18 We all have a relationship with food. For most of us, it is a positive relationship with food. Eating is one of the most important basic human activities. Biological + Social Significance Primed to be an Expert Eater Months 0 4 Months 3

4 Ridiculously Happy Eater! Rejection Food is Confusing 4

5 .and Stressful for Parents VS. 5

6 11/12/18 Ellyn Satter s Secrets of a Healthy Family 11 K.G.: Pre-Treatment 12 6

7 Video of Study Baseline 13 Orphaned Pediatric Population Increased survival of infants born premature and other infants who are medically complex, often with morbidities what include feeding disorders occurs against a backdrop of lack of access to evidenced-based care. 14 7

8 High Prevalence of Feeding Disorders Congenital or acquired respiratory, neurologic, cardiac, and gastrointestinal problems associated with high incidence of feeding disorders. Conditions Prevalence in Pediatric Population Incidence of Feeding Disorder Prematurity 10% 20% Cardio 1% 22% Allergy 3.9% 30% Intestinal Rehab.33% 47% GI 20% 20% The Unmet Need: More than 1 Million in the US with Chronic Feeding Concerns 16 8

9 Changing Diagnostic Landscape Estrem et al. (2016) 9

10 Formula supplementation via feeding tube or bottle Medical Solution 19 In critically ill children with a functioning gastrointestinal tract, enteral nutrition (EN) should be the preferred mode of nutrient provision, if tolerated. Sharp Position: Support any vehicle to promote optimal growth Sharp Position: Nutritional supplementation should involve a plan to wean (when feasible) 10

11 1) The multidisciplinary approach to treating the tube-fed child is advisable and should ideally involve the collaboration of a pediatric gastroenterologist, psychologist, dietitian, occupational therapist, and speech-language pathologist. 2) Many behavioral and physical characteristics must be present prior to attempting feeding tube weaning, including ability of the child to sit at a table, accept a bite, and adhere to the concept of structured mealtimes. 3) Age and degree of exposure to oral feeding experiences may affect prognosis for success with weaning of tube feeding. Range of Severity Mild - Medically cleared to begin the introduction of solids and/or liquids and showing interest in oral intake (reflected by consuming some food/liquid by mouth) with minimal to no refusal/aversion Management -> Single discipline (e.g., SLP) with coordinated support (e.g., nutrition, GI) Severe - Medically cleared to begin the introduction of solids, has active food refusal (e.g., tantrums, disruptions, aggression) that persists overtime Management -> Multidisciplinary Feeding Clinics 11

12 Persistent and Severe Feeding Difficulties PEDIATRIC FEEDING DISORDERS Pediatric Feeding Disorders Lack of a formal definition for a feeding disorder Sharp et al. (2017) Severe disruptions in nutritional and caloric intake exceeding ordinary variations in hunger, food reference, and/or interest in eating. 12

13 Volume: Associated Factors Medical Issues: Congenital or acquired respiratory, cardiac, and gastrointestinal problems, which cause difficult or painful eating experiences These include: Gastroesophageal reflux Food allergies Gastroenteritis Dysmotility Prematurity (with intubation) Bronchopulmonary dysplasia Short bowel syndrome Lactose intolerance Feeding problems occurs in 40-70% of children with chronic medical conditions (Lukens & Silverman, 2014) 25 Escape and avoidance of pain Resolution of underlying medical concern does not result in spontaneous weening due to active and persistent food refusal that prohibits contact with food 26 13

14 Parent Side A Disrupted Parent-Child Dyad The Learning Cycle Conducts meals in an effort to support and nourish child Removes feeding demand when faced with food refusal Escape Learning: Stressful mealtime situation ends Child Side Experiences pain/discomfort when eating Displays refusal behaviors when presented with food Escape Learning: Feeding demand is removed Parent Side A Disrupted Parent-Child Dyad The Learning Cycle Conducts meals in an effort to support and nourish child Removes feeding demand when faced with food refusal Escape Learning: Stressful mealtime situation ends Child Side Experiences pain/discomfort when eating Displays refusal behaviors when presented with food Escape Learning: Feeding demand is removed Lack of experience with food promotes oral-motor, experienced-based deficits Sensory experience with food is significantly diminished 14

15 Impact of Feeding Problems Frequent medical visits (Bandstra et al., 2011) Higher cost for medical care (Dempster, et al., 2015; Williams, et al., 2007) Increased hospitalizations (McSweeney, et al., 2013) Dysfunctional oral motor patterns (Sheppard, 2008) Impaired parent-child relationship (Satter, 1990) Increased parenting stress (Garro, et al., 2005; Heyman, 2004) Substantial time in managing care related tasks (Heyman, et al., 2004) 29 The Parent Experience I wish I had someone to connect with so I don t feel alone. I ve worked hard to find other parents, but its easy to feel like you are the only person on the planet whose kid doesn t eat. Constantly trying to feed a child who doesn t eat is so overwhelming and new. It sounds so simple and easy [to feed a child], but when you do this every day, its not. I thought that he would eventually ask for foods on his own accord, but he still only asks for the Pediasure. He still won t drink out of his sippy cup. My child is 100% tube dependent. We are lucky to get in a few bites a day. 15

16 The Unmet Need Pressing Needs to Develop and Disseminate Effective Interventions to Diminish the Proximal and Distal Impact of Chronic Food Refusal 16

17 Changing Diagnostic Landscape Estrem et al. (2016) DSM-5: Avoidant/restrictive food intake disorder (ARFID) introduced as a new diagnostic entity to replace and extend the DSM-IV diagnosis of feeding disorder of infancy or early childhood Feeding disorder of infancy or early childhood ARFID 17

18 Replacement: Key Changes to DSM-5 Structural Reorganization DSM-IV: Disorders usually diagnosed in infancy, childhood, and adolescence Grouped with autism and other conditions presumably involving an early age of onset, often with a congenital and/or developmentally-linked etiology DSM-5: Feeding and Eating Disorders Lifespan view of avoidant/restrictive food intake Extension: Key Changes to DSM-5 1) Removed predecessor s age of onset restriction (i.e., 6 years) DSM-IV previously emphasized a typical emergence during the first year of life, with a late onset described as 2 or 3 years 2) Removed weight loss as lone diagnostic criteria by adding three additional manifestations 18

19 ARFID Manifestations Criteria A: A1. Significant weight loss A2. Significant nutritional deficiency A3. Dependence on enteral feeding or oral nutritional supplements A4. Marked interference with psychosocial functioning ARFID Diagnostic Criteria B. Not better accounted for by lack of food or culturally sanction practice C. Does not occur exclusively in the context of AN or BN D. Not attributed to a current medical condition or other mental condition 19

20 The Standard of Care for Severe Feeding Difficulties INTENSIVE MULTIDISCIPLINARY INTERVENTION 20

21 Definition of Intensive Multiple therapeutic meals per day Not a description of what occurs during the meals Treatment delivered across consecutive, contiguous days Spanning multiple weeks Treatment setting involve a multidisciplinary team of professionals coordinating care 21

22 Description of Included Studies 11 studies involving a total of 593 participants 9 non-randomized studies (chart reviews); 2 RCTs 8 from US; 3 outside the US Delivery of care Inpatient 8 studies Day treatment 4 studies Target of Intervention = Tube dependency Intervention Mechanisms Behavioral Intervention: N = 8 (73%) Tube Weaning: N = 6 (55%) Oral-Motor Exercises: N = 5 (45%) Nutrition Education: N = 2 (18%) 22

23 Take Home Recommendations 1. Multidisciplinary intervention should involve, at a minimum, a professional team that includes psychology, medicine, nutrition, and speech-language pathology/occupational therapy 2. Behavioral intervention is a central treatment element for increasing oral intake while concurrently addressing the mealtime difficulties that prohibit consumption Take Home Recommendations (cont.) 3. Treatment includes the active participation and involvement of caregivers, ideally with systematic training to promote generalization into the home and community settings 4. Discharge planning involves a transition plan for outpatient follow-up as a step-down process from daily intervention 23

24 The Children s Model Four Pillars of the Feeding Program Multidisciplinary intervention should involve, at a minimum, a professional team that includes psychology, medicine, nutrition, and speech-language pathology/ occupational therapy (Sharp et al., 2017). Medicine Nutrition Skill Behavior Assesses safety to initiate feeding intervention and provides ongoing oversight of possible medical needs 48 Monitors growth and nutritional intake and provide oversight to ensure children are provided with balanced nutrition, grow appropriately, and tolerate new foods Focuses on reducing hypersensitivity to gagging and new food textures while building oral-motor coordination related to chewing, tongue control, swallowing and selffeeding Structures meals using behavior analysis and related techniques to promote intake of new foods; conduct caregiver training to support generalization 24

25 The Special Sauce Psychology Oversees the behavioral protocols Nutrition Nutritional intake and meal planning Structured Meals based on Applied Behavior Analysis Medicine ID/Treat Organic Factors Skill Safety and Texture Advancement The Children s Model Established methodology with demonstrated benefit for patients and their families. Positive Program Outcomes: Bite Acceptance: 86% Improvement Swallowing: 90% Improvement Grams Consumed: 92% Improvement Pre-Treatment Bites Accepted Post-Treatment Pre-Treatment Bites Swallowed Post-Treatment Pre-Treatment Grams Consumed Post-Treatment 50 25

26 Volume Case Example: Post Treatment Post treatment video 52 26

27 Addessing Barriers to Accessing Care A GROWING UNMET NEED Intensive Feeding Programs 27

28 Parent Advocacy 28

29 Better Recognition in Clinical Setting Tools Behavior Crying Disruptions Elopement Aggression Oral Motor Lips Cheeks Jaw Tongue Multidisciplinary Approach Multidisciplinary approach is necessary to assess and treat feeding problem due to multifaceted etiology and impact (Volkert, Patel, & Peterson, 2016; Sharp, et al., 2016; Silverman, 2010) Nutrition Volume/Growth Diet Quality Social Participation Medical Food Allergies Reflux Dysmotility Short Gut 58 29

30 Medical - Assessment 2 nd Conduct detailed H&P Sharp, Berry, Cole-Clark, Criado, & McElhanon (2016) -> Head-to-toe guide for symptoms, history, and examination in children with Feeding Problems 30

31 Nutrition Assessment Growth Weight Classification Underweight Normal Weight Overweight Obesity BMI-for-Age Percentile <5 th percentile 5 th - <85 th percentile 85 th - <95 th percentile 95 th percentile 61 Nutrition Assessment Foods Consistently accepted foods Food Group Fruits Vegetables Meats/Beans Grains Dairy Drinks Snacks/Sweets Foods Accepted 62 31

32 Nutrition Assessment Dietary Status Skill (SLP/OT) at Children s - Assessment Beckman Oral Motor Assessment Establish baseline function Identify strengths/areas of need Texture advancement 32

33 Skill Assessment Beckman Oral Motor Evaluation Debra Beckman MS CCC/SLP, rev Baseline measurement of motor skill of oral structures for the purposes of feeding (and speech) Lips, Cheeks, Jaw, Tongue and Soft palate; Alignment Tongue base, Jaw and Hard palate Minimal competence for functional skill Infancy- adulthood A criterion referenced, evidencebased tool Assessment: Behavioral Interview Structure Child s behavioral response Parent s behavioral response 33

34 Navigating the triage process TREATMENT Where to start? Ideally Multidisciplinary Team Evaluation and Treatment involving 4 pillars Reality Lack of access most often necessitates a single discipline conducting feeding disorder intervention Most often is an SLP 34

35 SLPs Triage: Matching Patient to Treatment Patient presenting problems Medical risk (e.g. aspiration, food allergies, GI symptoms) Primary source of calories (food, formula, feeding tube) Behavioral presentation (e.g. high intensity/rate refusal behaviors) Oral motor skill deficits (e.g. inability to chew, lateralization) 70 35

36 Build a Local Team Identify practitioners with subspecialty expertise across the 4 pillars Establish working relationship with defined scope of practice for collaboration Build communication system to unify care model Identify shared assessment and treatment opportunities New clinics, parent goal meetings, satellite locations Take Home Points There is a well-established evidence base to help families in need Medical community needs to be empowered to access this intervention Look beyond growth.and focus on source of intake Story of GI Consult Stay tuned.parent passport and guidance of assessment coming soon. 36

37 Questions? 37