Caregiver Questionnaires

Several tools that use data obtained from caregiver observations and caregiver report of history relevant to swallowing and feeding assessment have been published. Heckathorn performed a systematic review identifying such assessments [14]. These assessments are useful not only for collecting information on the patient’s swallowing and feeding but for helping the caregiver to organize their thoughts and observations so as to more clearly convey them to the clinician. Despite practical usefulness, inferences taken from these assessments must be made with caution. Currently, only two assessments provide normative data [14]. The Mealtime Behavior Questionnaire is a 33-item list of 5-point ordinal scales divided into subscales of food refusal/avoidance, food manipulation, mealtime aggression/distress, and coughing/choking/vomiting [15]. Total scores of greater than or equal to 100 are considered to be abnormal. t and z scores can be calculated for each subscale and compared to “nonclinical” samples reported in the original publication. A second tool, the Screening Tool of Feeding Problems, modified for children (STEP-child), provides normal/abnormal cutoffs for subscales of rapid feeding, food refusal, food selectivity, vomiting, and stealing food [16]. While useful for assessment of feeding and consideration of mealtime behaviors that could be related to swallowing dysfunction, this scale does not include items that interrogate swallow function directly.

Caregiver Interview

Every aspect of swallowing should be addressed. Determining the type of bolus (breast milk, formula, cow’s milk, solids, etc.) is important when considering how bolus characteristics impact swallow performance; this can also give the clinician a sense of overall developmental level in late infancy and early toddlerhood. The methods of bolus delivery (breast, bottle, open cup, self-feeding versus dependence) and positioning during feeding further characterize swallow function and represent primary targets for modification if necessary. Volume of intake, frequency of intake, and duration of feeding are also relevant. While these parameters vary widely both within and between patients, most infants feed every 2–4 h with longer breaks at night, and most feedings last between 10 and 30 min [12]. It can also be beneficial to ask the parent, “Is feeding easy, stressful, or somewhere in between?” This often provides tremendous insight into quality of feeding and can elicit additional caregiver descriptions that may assist in diagnosing the disorder.

Finally, signs of aspiration and swallowing difficulty should be discussed. These include the more obvious signs of coughing, choking, throat clearing, wet/gurgling voice quality, and congestion of breath sounds with feeding [17]. More subtle signs of a swallowing problem in infants and very young children include food refusal and/or signs of distress, such as widely open/“surprised” eyes, splaying of hands/feet, tight clenching of hands/feet, back-arching, head-turning or other attempts to disengage from the nipple or food source, and even shutting down, which may be described as “falling asleep” by caregivers [12, 18, 19].

Contributing Medical History

After a general understanding of the patient’s swallowing has been obtained, the clinician should begin discussing additional aspects of the patient’s medical profile that may contribute to swallowing difficulty.

Gastrointestinal symptoms commonly contribute to pediatric swallowing disorders and should be frankly discussed with caregivers. Does the patient have frequent or large-volume spit-ups? Does the patient seem uncomfortable before or during spit-ups (e.g., with back-arching and fussing), or are they “happy spits?” Does the patient have difficulty with constipation? Do there seem to be any triggers for any of these gastrointestinal difficulties? As translational research continues to elucidate mechanisms of neural swallowing control, it is becoming increasingly clear that gastric and esophageal disorders have a direct impact on oropharyngeal swallow function [20].

Respiration and deglutition are intimately related [5, 7]. For infants, respiratory difficulties can interrupt the suck-swallow-breathe cycle and cause some degree of swallowing dysfunction. Asking the caregiver if the patient experiences breathing difficulties at any time, especially during feeding or in certain positions, may be relevant to swallow function. If caregivers endorse breathing difficulty, they should be asked to describe this. Is it noisy or just very fast? If it’s noisy, is it on the inhalation, exhalation, or both? Does it change based on position? What about activity (i.e., feeding, crawling, crying, sleeping)? If noisy breathing is endorsed or observed, consultation with otolaryngology and upper airway visualization are recommended.

Voice problems , addressed elsewhere in this text, can point to potential etiologies of swallowing difficulty. A breathy, weak voice may indicate incomplete glottic closure or poor pulmonary drive. Wet, gurgling voice may indicate penetration, aspiration, or pharyngeal residue. Rough voice may indicate presence of a mass lesion in the upper airway. It cannot be emphasized enough that if any of these voice problems are reported by caregivers or observed by the clinician, consultation with otolaryngology and laryngeal visualization are necessary.

Neurologic status has a tremendous influence on swallow function [6]. Neurologic status can be very grossly measured by assessing the patient’s level of alertness and arousal. “Calm/alert” and “semi-drowsy but actively engaged” are the typical states of arousal in normal feeding [21]. Because young infants still possess certain reflexive feeding behaviors (sucking/biting reflex, rooting reflex), “passive feeding” can occur. In passive feeding, well-intentioned caregivers may place a nipple in a non-alert infant’s mouth, and, with sufficient stimulation, sucking/biting reflexes can be elicited, resulting in bolus transfer. Depending on the position of the infant, the bolus can then passively flow to the posterior oral cavity, significantly increasing risk for pharyngeal swallow dysfunction and reduced airway protection. The clinician should obtain information on the patient’s typical state of arousal during feeding and nonfeeding times. Additional insight into neurologic status and its impact on swallowing function can be gained through discussion of which developmental milestones the patient has reached.

For each disordered finding (swallowing, feeding, respiratory, voice), the time of onset, nature of onset (gradual or sudden), progression of the finding (worsening, improving, or stable), transience (constant or intermittent), and current status (most recent episode) should be documented.

Child Interview

If the patient is verbal, they should also participate in providing the case history. Younger children in particular look to their caregivers to determine how to respond to an unfamiliar clinician. If good rapport with the caregiver is established prior to interviewing the child, the child will be much more likely to participate. Optimizing the environment to make the child feel comfortable will also aid in eliciting a meaningful interview. For example, one might set up a child’s table and chairs equipped with a variety of toys in the examination room. In the same vein, initiating conversation with the child by first joining in play and gradually posing questions is often more productive than a face-to-face bombardment of questions. When discussing swallowing with the patient, be sure to use child-appropriate language. For example, when asking the child about reflux, one might pose the question, “Do you ever get mini throw-ups, where you puke a little in your mouth?” rather than “How often do you experience heartburn?”

Assessment Tools

In addition to assessment tools completed by caregivers, there are a number of tools designed to be completed by clinicians. These can be used to guide swallowing assessment. Heckathorn’s 2015 systematic review identifies four tools that provide normative data related to swallowing and/or feeding [14]. The Oral Motor Assessment Scale is designed for oral motor skills assessment of children with cerebral palsy aged 3–13 years and 11 months [22]. The Schedule for Oral Motor Assessment is completed by a clinician based on feeding observations for ages 8 months to 2 years, separated into discrete categories of puree, solid, semisolid, cracker, bottle, trainer cup, and open cup [23, 24]. Each category contains a norm-referenced cutoff. Other tools with norm-referenced cutoffs include the Pre-Speech Assessment Scale, designed for young children with cerebral palsy or other developmental disabilities aged 0–2 years and 1 month [25], and the Pediatric Assessment Scale for Severe Feeding Problems, designed for infants with severe feeding problems who feed orally and are aged 0–4 months [26].

Physical Assessment

State of Arousal and Position

As previously mentioned, state of arousal (calm/focused/alert versus distressed or sleeping) and ability to modify state of arousal will have a significant impact on swallowing function. For infants in particular, the ability to be soothed is important for establishing a well-coordinated suck-swallow-breathe cycle. For example, an infant who is very distressed may not be able to organize feeding behaviors sufficiently to swallow safely and effectively and may not be able to modify the suck-swallow-breathe cycle sufficiently to account for the alterations in respiratory rate associated with crying. Gross body movement patterns can also influence swallowing in infants. For example, a distressed infant with back-arching whose neck is constantly in extension will modify the shape of the aerodigestive tract such that aspiration can more easily occur (i.e., with a “chin up” position). The ideal alternative is a position of comfortable flexion with the nose approximately aligned with the navel. If the infant typically feeds in a distressed state, while in extension or with other suboptimal body positioning, this should be noted, and modification to state or position will likely be a first target for intervention.

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