Parent Preferences Regarding Home Oxygen Use for Infants with Bronchopulmonary Dysplasia

Abstract

Objectives: To determine parent preferences for discharge with home oxygen in infants with bronchopulmonary dysplasia.

Study design: This was a prospective study of parents of infants born at <32 weeks' gestation with established bronchopulmonary dysplasia and approaching neonatal intensive care unit (NICU) discharge. Parents were presented a hypothetical scenario of an infant who failed weaning to room air and 2 options: discharge with home oxygen or try longer to wean oxygen. The initial scenario risks reflected a 1.5-week difference in NICU length of stay and no differences in other outcomes. Length of stay and readmission outcomes were increased or decreased until the parent switched preference. Three months after discharge, parents were asked to reconsider their preference. Differences were analyzed by χ² or Kruskal-Wallis tests.

Results: Of 125 parents, 50% preferred home oxygen. For parents preferring home oxygen, the most important reason was comfort at home (79%). Forty percent switched preference when the length of stay difference decreased by 1 week; 35% switched when readmission increased by 5%. For parents preferring to stay in NICU, the most important reason was fear of taking care of the child at home (73%). Thirty-two percent switched preference when the length of stay difference increased by 1 week; 31% switched when readmission decreased by 5%. One hundred ten parents completed the 3-month follow-up; 80 were discharged with home oxygen. Seventy-eight percent would prefer home oxygen (97% who initially preferred home oxygen and 60% who initially preferred to stay in the NICU).

Conclusions: Parents weigh differences in NICU length of stay and readmission risk similarly. After discharge, most prefer earlier discharge with home oxygen. Earlier education to increase comfort with home technology may facilitate NICU discharge planning.

Keywords: bronchopulmonary dysplasia; home oxygen; neonatal intensive care; parent preferences; premature infants.

Figure 1.. Initial theoretical scenario with starting risks.

Imagine that your baby is still on oxygen at 36 weeks corrected age, which is one month before your due date. Your baby is stable on low flow oxygen, off caffeine, and eats 3/4 of feedings by mouth. When the nurse tried to take off the oxygen 3 days ago, Your baby’s oxygen saturations on the monitor were 88–92%. Your baby has looked comfortable since then but has been breathing faster and has not gained any weight in those 3 days.

Figure 2 (online).. Sample illustration of sliding cards for Threshold Technique interview.

During the interview, the four outcomes of length of NICU stay, risk of hospital admission, risk baby will need breathing tube again in the next year, and risk of developmental delay at 2 years were systematically varied, with the direction of changing risk dependent upon the parent’s initial preference.

Figure 3.. Ranked importance of factors influencing initial preference.

Figure 3 illustrates parent responses to the question “Can you rank all of the following factors from 1 to 8, with 1 being the most important factor in making your initial home oxygen preference decision?” The y-axis lists the factors that parents were given to choose from, and the x-axis shows the proportion of parent responses. Importance rankings were grouped: high importance = ranks 1–3; medium importance = ranks 4–5; low importance = ranks 6–8. p values indicate chi-squared tests for difference in ranked importance between groups by initial preference for home oxygen (Home O2) versus staying longer in the NICU (Stay in NICU). Abbreviations: NICU, neonatal intensive care unit

Figure 4.. Cumulative proportion of parents willing to switch preference during Threshold Technique.

Figure 4 illustrates the cumulative proportion of parents who switched preference as outcomes were systematically manipulated for each of four outcomes: A) NICU length of stay; B) re-admission; C) re-intubation; D) developmental delay. For each figure, the y axis shows the cumulative proportion of parents in their respective initial preference group who would switch preference (Switch to Home Oxygen = black bars; Switch to NICU = gray bars); the x axis shows the switch point for each outcome. The starting risk in the initial scenario is highlighted by a box on the x axis.