Unsafe oral feeding may present as:
Choking, aspiration, adverse cardiorespiratory events (e.g., apnea, bradycardia) during oral feeds
Other adverse mealtime events (e.g., gagging, vomiting, fatigue, refusal)
Delayed feeding skills may present as:
A child who is unable to consume age-appropriate liquid and food textures. The child may require food/fluid to be modified from its original form (e.g., blending solids into a puree) or may rely on a natural variant (e.g., a naturally smooth food) that is not age-appropriate
A child who has deficits in use of feeding utensils and devices or self-feeding skills. They may require special feeding equipment, positioning, or feeding strategies
Inefficient oral feeding may present as:
Prolonged mealtime duration (greater than 30 min). These children may require modified food textures or special feeding equipment or strategies
Inadequate oral intake. These children may require nutritional supplementation – orally or via gavage tube
PFD can arise in association with dysphagia, aspiration, or a choking event. At other times, there is no apparent physical reason for PFD, although aversive experiences in or around the mouth (e.g., tube feeding, suctioning), undetected pain (e.g., as associated with tonsillitis, pharyngitis, or teething), or sensory disturbances (e.g., oral hypersensitivity) may be involved at some level. Factors within the child, caregiver, and the feeding environment can contribute to and maintain PFD (e.g., increased parent attention when the child gags or fusses). Problem feeding behaviors are generally the resultant dysfunction from having PFD (versus the cause), but are often among the first concerns that caregivers express regarding feeding their child.
Feeding compensations that may be utilized in infants with pediatric feeding disorders
Feeding compensations that may be utilized in children with pediatric feeding disorders
Restricted oral intake (insufficient intake of energy, nutrients, and/or fluid) |
Limited range of food in the diet |
Limited range of textures in the diet (often a reliance on “easy-to-eat foods,” which are pureed, soft, or dissolvable) |
Very low or high weight-for-height |
Prolonged mealtime duration (>30 mins at mealtimes, >2 h per day spent trying to feed the child) |
Battles/problematic behavior at mealtime |
Family stress related to the child’s eating patterns |
In more severe cases, children with PFD will require full or partial nutritional support via gavage tube feeding as a result of their restrictive dietary intake. As a consequence, this further restricts the child’s opportunities to learn the motor, sensory, and cognitive skills required to eat a variety of healthy fresh foods. Children with mild PFD may have a problem in one or more of these key areas, but generally grow sufficiently. Children with moderate PFD generally have problems across several of these areas and would not grow sufficiently without nutritional supplementation in the form of oral formula feeds and/or energy and nutritional supplements. Children with severe PFD generally have problems across all of these areas and are unable to meet their fluid/energy/nutritional requirements from an oral diet, thus requiring tube feeding.
PFD can adversely impact a child’s quality of life and that of the child’s family. Children with PFD often take significantly longer to eat/feed each day, limiting their time to participate in other developmentally appropriate activities (e.g., play) and limiting their parents’ time to do the other activities they need to do each day.
Health-Related Quality of Life (HRQoL)
Health-related quality of life (HRQoL) is defined by the United States Office of Disease Prevention and Health Promotion as “a multi-dimensional concept that includes domains related to physical, mental, emotional, and social functioning. It goes beyond direct measures of population health, life expectancy, and causes of death, and focuses on the impact health status has on quality of life” [3].
Relevant health-related quality of life (HRQoL) tools for children and families affected by feeding/swallowing disorders
Child HRQoL assessments |
Multidimensional: 23 items assess physical, emotional, social, and school functioning |
Child with chronic illness self-report and parent-proxy report forms are available |
Extensively developed assessments |
Generic core scale is not condition specific |
PedsQL™ Gastrointestinal Symptoms Module [6] and PedsQL™ EoE Module [7, 8] |
These are later versions of the PedsQL designed specifically for children with specific gastrointestinal conditions |
These versions come closer to specifically capturing HRQoL for children with feeding disorders, which is often comorbid with gastrointestinal conditions such as eosinophilic esophagitis (EoE) |
Parent and family HRQoL assessments |
PedsQL™ Family Impact Module [9] |
Aimed at identifying impact of health problems on performance of daily activities and relationships: |
Child functioning: Physical, emotional, social, school |
Parent functioning, family functioning |
Not specific to families of children with feeding and swallowing disorders |
Feeding/Swallowing Impact Survey (FS-IS) [10] |
Specific to parents of children with feeding and swallowing disorders |
Parent reported: assesses feeding, worry, daily activities |
Feeding Impact Scales (Parent Impact and Family Impact) [11] |
Specific to parents and families of children with feeding disorders |
Initial item list adapted from Redle’s Pediatric Feeding and Swallowing Disorder Family Impact Scale [12] |
Item response theory analysis resulted in 13-family impact items and 12-parent impact items |
Parent report of impact on self, and parent report of impact on family |
1 | Nothing by mouth |
2 | Tube dependent, with minimal attempts at liquids/foods |
3 | Tube dependent, with consistent intake of liquids/foods |
4 | Total oral diet, but requiring special preparation of liquids (thickened liquids) or compensations (e.g., special feeding equipment, feeder uses special strategies) |
4.5 | Total oral diet, but requiring special preparation of solids (e.g., foods of different texture to peers and/or liquid supplements) or compensations |
5 | Total oral diet, without special preparation (i.e., regular thin fluids, foods of same texture as peers, no additional liquid supplements), but with compensations |
6 | Total oral diet, with no restrictions relative to peers |
International Classification of Functioning, Disability and Health (ICF)
Health conditions (diseases, disorders, and injuries) are classified primarily in the International Classification of Diseases, ICD, which provides an etiological framework [15].
Functioning and disability associated with health conditions are classified in the International Classification of Functioning, Disability and Health, ICF [16].
These two resources complement each other and are designed to be used together to document health conditions and associated complications.
Area of ICF model | Relationship to feeding and swallowing |
|---|---|
Body structures | Anatomy and physiology of aerodigestive tract |
Body functions | Swallowing, sucking, biting, chewing, cognition, motor control, sensory perception |
Activity versus disability | Ability to eat a meal, self-feed, drink a bottle, drink from a cup |
Determine, where necessary, whether use of modified food/fluids, special utensils, altered positioning, or special feeding strategies can prevent activity limitations and disability | |
Participation versus handicap | Participation in family mealtimes and social and educational settings where food/fluid is consumed |
Determine, where necessary, whether social inclusiveness policies and strategies can prevent participation limitations/handicap for children and their families on tube feeds and those who cannot eat developmentally appropriate foods/fluids | |
Personal and environmental factors | Family’s understanding of the child’s disorder Family’s access to appropriate and hygienic food, fluids, utensils, and seating equipment Where necessary, the family’s ability and willingness to prepare modified food/fluids, use special feeding utensils/seating equipment, deliver tube feeds, or apply special feeding strategies Where necessary, the ability and willingness of staff at day care/school to prepare modified food/fluids, use special feeding utensils/seating equipment, deliver tube feeds, or apply special feeding strategies Societal and cultural judgment of families who have a child with feeding disorder Policies to support and include children and families with disability in educational and social settings |
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