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Table 3 Domains and behaviors used in survey 2

From: Development of a proxy-reported pulmonary outcome scale for preterm infants with bronchopulmonary dysplasia

Domain

Behavior

Sleep

Interrupted sleep/restlessness

 

Excessive sleepiness

 

Sustained active or quiet sleep

Arousal/transition

Transitions well between states

 

Arouses easily, but to agitation

 

Arouses with difficulty

Awake state: General state during care time

Mainly quiet alert or active alert

 

Wiped out, persistent drowsiness

 

Restless, agitated

Awake state: Calming during care time

Calms, but with some difficulty

 

Irritable, not easily calmed

 

Calms with containment, voice soothing

Awake state: Eye appearance during care time

Eyes intermittently opened and closed

 

Eyes tightly closed

 

Engaged/alert

 

Panicked/wide-eyed

 

Glazed/blank

Awake state: Eyebrow appearance during care time

Raised

 

Relaxed/neutral

 

Furrowed

Awake state: Color change during care time

Mottled

 

Pale

 

Dusky

 

None

Awake state: Tone during care time

Arched/shoulders elevated or retracted

 

Floppy

 

Mainly flexed/hands loosely flexed or opened and closed

 

Some increased extensor tone, fingers splayed

Feeding mechanics: Rooting/feeding cues

Roots and initiates feeding cues independently

 

Minimal cues/rooting

Feeding mechanics: Mouth/tongue position during first 5 minutes of feeding

Opened and rounded/seals on nipple spontaneously or with prompting

 

Turns head away/hesitant to open mouth

 

Refuses to eat

 

Open mouth posture/tongue and chin positioned to open airway

Feeding mechanics: Tone during first 5 minutes of feeding

Floppy

 

Mainly flexed/hands loosely flexed or opened and closed

 

Arched/shoulders elevated or retracted

 

Some increased extensor tone, fingers splayed

Feeding mechanics: Desaturation during first 5 minutes of feeding

Not able to accept nipple without desats

 

Frequent breaks required for pacing

 

Desats with sustained sucking; recovers with intervention

Feeding mechanics: Respiratory rate (RR) with feeding

RR above baseline during sucking pause periods/recovers slowly

 

Tachypnea at onset of feeding only

 

RR above baseline during sucking pause periods/recovers quickly

Respiratory: desaturation during care time

Severe or frequent

 

Mild or intermittent or occasional

 

Moderate or somewhat common

Respiratory: tachypnea during care time

Constant

 

No tachypnea

 

Occasional or intermittent