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Table 7 Response option rewording after cognitive interviews

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

Question

Original Response Options

Revised Response Options

How would you describe the infant's general state?

Mainly calm or quiet

Active or quiet sleep

 

Restless

Drowsy - eyes open and closed

 

Agitated or irritable

Awake

 

Distressed

 
 

Frantic

 

How would you describe the infant's general status?*

n/a

Mainly calm or quiet

 

n/a

Tired

 

n/a

Restless

 

n/a

Agitated or irritable

 

n/a

Distressed

 

n/a

Frantic

How would you describe the infant's tone?

Soft flexion

Soft or neutral flexion

 

Some increased extensor tone, fingers splayed

Arms extended

 

Increased extensor tone with arching and/or shoulders elevated or retracted

Arms extended with arching and/or shoulders elevated or retracted

  

Limp (wiped out)

How do the infant's eyes appear?

Asleep - can't observe

Asleep or closed - can't observe

 

Engaged/alert/bright-eyed

Crying

 

Easily distracted

Tired

 

Panicked/wide-eyed

Engaged or alert

  

Easily distracted

  

Panicked

How would you describe the infant's endurance during care time?

("Endurance" revised to "stamina")

No fatigue (tolerates care time well

Sufficient stamina - tolerated care time well

 

Minimal fatigue (shows some signs of fatigue with care but recovers quickly)

Tired some with care but recovered quickly

 

Moderate fatigue (frequent signs of fatigue with care but recovers with pause)

Tired easily with care but recovered with pause

 

Easily fatigued ('wiped out' 3-5 minutes into normal care time)

Tired easily without recovery ('wiped out' 3-5 minutes into normal care time)

  1. * new question broken out of "general state" question as a result of discussion, thus, original response not applicable (n/a)