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Table 1 Infant and Parent Demographics (n = 21)

From: Viewpoints from families for improving transition from NICU-to-home for infants with medical complexity at a safety net hospital: a qualitative study

 

n (%) or Median (IQR)

Infant demographics

Race/Ethnicity, n (%)

 Hispanic

15 (71)

 Black non-Hispanic

2 (10)

 White non-Hispanic

3 (14)

 Asian

1 (5)

Gestational age (weeks), median (IQR) if preterm

31.8 (28.7, 34.5)

< 32 weeks, n (%)

9 (43)

< 28 weeks, n (%)

2 (9.5)

Term infants being followed in high risk infant follow up clinic, n (%)

4 (19)

Birth weight (grams), median (IQR)

1750 (1305, 2641)

Chronologic Age (months), median (IQR)

8 (7, 13.7)

Corrected gestational age (months), median (IQR)

6 (6, 12)

Length of stay of hospitalization in NICU (index hospitalization), days, median (IQR)a

83 (31, 135)

Time from discharge (months), median (IQR)

6.5 (4.25, 9.5)

Infants with medical complexityb

(Diagnoses list available in Appendix)

 

 Complex Chronic Disease (C-CD), n (%)

14 (67)

 Non Complex Chronic Disease (NC-CD), n (%)

7 (33)

Number of medications used after discharge, median (IQR)

4 (1, 5)

Number of medical subspecialists after discharge, median (IQR)

2 (1.7, 5)

Using durable medical equipmentc, n (%)

10 (47)

 Oxygen

5 (24)

 Feeding tube (gastrostomy/jejunostomy)

7 (33)

 Tracheostomy/Ventilator dependence

1 (5)

Using occupational therapy, n (%)

9 (43)

Using physical therapy, n (%)

7 (33)

Bayley Scores (if > 6 months), median (IQR)

 

 Composite Cognitive

95 (29, 101)

 Composite Language

82 (70, 91)

 Receptive Language (scaled score)

8 (4, 9.2)

 Expressive Language (scaled score)

7 (4.7, 7.2)

 Composite Motor

75 (70, 92)

Fine Motor (scaled score)

8 (3.5, 8.5)

 Gross Motor (scaled score)

4.5 (2.7, 7.2)

Maternal and family demographics

Age (years) at delivery, median (IQR)

26 (23, 27)

Parity status, n (%)

 

 First child

9 (43)

 Siblings

6 (29)

 Missing values

6 (29)

Primary Language, n (%)

 English

17 (81)

 Spanish

4 (19)

Neighborhood equityd, n (%)

 Home zip code in service planning area (SPA) with 3th quartile economic hardship index

4 (19)

 Home zip code in service planning area (SPA) with 4th quartile economic hardship index

9 (43)

Distance from home zip code to High Risk Infant Follow Up Clinic (miles), median (IQR)

20.2 (11.2, 27.8)

 <10 miles, n (%)

5 (24)

 ≥10 miles to < 20 miles, n (%)

4 (19)

 ≥20 miles, n (%)

12 (57)

Medicaid/California Children’s Services, n (%)

21 (100)

Receiving income assistance if eligible, n (%)

7 (33)

Owning a smartphone or tablet with internet capability, n (%)

21 (100)

  1. aLength of stay represents number of days (if transferred to higher level of care)
  2. bDefined by Pediatric Medical Complexity Algorithm (version 3.0) (measurement tool accessed at: https://www.seattlechildrens.org/research/centers-programs/child-health-behavior-and-development/labs/mangione-smith-lab/measurement-tools/)
  3. cMedical equipment: gastrostomy tube, tracheostomy tube, helmet, oxygen, colostomy
  4. dService planning area 6, 7, 8 (4th and highest quartile of economic hardship index)