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Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness.

BACKGROUND
Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their nonverbal status. Thus, pain and distress must be interpreted by a health care provider or other proxy from their own observations or perceptions. There is no standard research or clinical measure for pain and distress in infants.


OBJECTIVE
The purpose of this analysis was to evaluate the use of the COMFORT-Behavior Scale as a measure of pain and distress in infants diagnosed with life-threatening or life-limiting illness in the neonatal intensive care unit in comparison with the nurse-documented Neonatal Pain, Agitation and Sedation Scale, the infants' Technology Dependence Scale, and the mothers' report of total perceived symptom scores.


METHODS
Infants diagnosed with life-threatening or life-limiting illnesses and hospitalized in a level IV neonatal intensive care unit in the Midwestern United States and their parents were included. Measurement of pain and distress in infants was collected weekly from enrollment through 12 weeks or until discharge whichever occurred first. Observations for the COMFORT-Behavior Scale were conducted before and after standard caregiving activities. Pearson r correlations were used to compare means between pain and distress, technology dependence, and mothers' total perceived symptom scores over time.


RESULTS
Data from seventy-eight infants (46 males, 32 females) ages 23-41 weeks gestation at birth were analyzed. No correlations were found among the COMFORT-Behavior Scale; Neonatal Pain, Agitation, and Sedation Scale; and mothers' total perceived symptom scores. Moderate correlations were found among the Technology Dependence Scale; mothers' total perceived symptom scores; and the Neonatal Pain, Agitation, and Sedation Scale.


DISCUSSION
Performing COMFORT-B observations can be challenging, and it is unclear whether the information obtained from the COMFORT-B added to the assessment of the infant's pain and distress that is typically recorded in the health record or from parents. Further evaluation is needed to determine if it is more reliable to collect the Neonatal Pain, Agitation, and Sedation Scale scores rather than conduct observations using the COMFORT-Behavior Scale in studies of infants with life-threatening and life-limiting illness in the NICU.