title: The impact of preterm birth <37 weeks on parents and families: a cross-sectional study in the 2 years after discharge from the neonatal intensive care unit.
abstract: BACKGROUND
  Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact.
  
  
  METHODS
  We surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and (2) the Infant Toddler Quality of Life parent emotion and (3) time limitations scores. Potentially modifiable factors were use of community-based services, financial burdens, and health-related social problems. We estimated associations of potentially modifiable factors with outcomes, adjusting for socio-demographic and infant characteristics using linear regression.
  
  
  RESULTS
  Median (inter-quartile range) infant gestational age was 28 (26-31) weeks. Higher Impact on Family scores (indicating worse effects on family functioning) were associated with taking ≥3 unpaid hours/week off from work, increased debt, financial worry, unsafe home environment and social isolation. Lower parent emotion scores (indicating greater impact on the parent) were also associated with social isolation and unpaid time off from work. Lower parent time limitations scores were associated with social isolation, unpaid time off from work, financial worry, and an unsafe home environment. In contrast, higher parent time limitations scores (indicating less impact) were associated with enrollment in early intervention and Medicaid.
  
  
  CONCLUSIONS
  Interventions to reduce social isolation, lessen financial burden, improve home safety, and increase enrollment in early intervention and Medicaid all have the potential to lessen the impact of preterm birth on parents and families.
authors.affiliation: Center for Fetal and Neonatal Medicine, USC Division of Neonatal Medicine, Children's Hospital Los Angeles; Keck School of Medicine, University of Southern California, 4650 Sunset Boulevard, MS #31, CA, 90027, Los Angeles, USA. alakshmanan@chla.usc.edu.|Newborn and Infant Critical Care Unit, Children's Hospital Los Angeles, 4650 Sunset Boulevard, MS #31, CA, 90027, Los Angeles, USA. alakshmanan@chla.usc.edu.|Department of Preventive Medicine, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA. alakshmanan@chla.usc.edu.|Center for Health Policy and Economics, University of Southern California, Los Angeles, CA, USA. alakshmanan@chla.usc.edu.
authors.forename: Ashwini
authors.identifier: http://orcid.org/0000-0001-8259-1905
authors.initials: A
authors.lastname: Lakshmanan
authors.affiliation: Drexel School of Medicine, Philadelphia, PA, USA.
authors.forename: Meghana
authors.initials: M
authors.lastname: Agni
authors.affiliation: Division of Research, Kaiser Permanente, Oakland, CA, USA.
authors.forename: Tracy
authors.initials: T
authors.lastname: Lieu
authors.affiliation: Division of Emergency Medicine, Boston Children's Hospital, Boston, MA, USA.
authors.forename: Eric
authors.initials: E
authors.lastname: Fleegler
authors.affiliation: Saban Research Institute, Children's Hospital Los Angeles, Los Angeles, CA, USA.
authors.forename: Michele
authors.initials: M
authors.lastname: Kipke
authors.affiliation: Center for Fetal and Neonatal Medicine, USC Division of Neonatal Medicine, Children's Hospital Los Angeles; Keck School of Medicine, University of Southern California, 4650 Sunset Boulevard, MS #31, CA, 90027, Los Angeles, USA.
authors.forename: Philippe S
authors.initials: PS
authors.lastname: Friedlich
authors.affiliation: Division of Newborn Medicine, Boston Children's Hospital, Boston, MA, USA.|Beth Israel Deaconess Medical Center, Boston, MA, USA.|Department of Social and Behavioral Sciences, The Harvard T.H. Chan School of Public Health, Boston, MA, USA.
authors.forename: Marie C
authors.initials: MC
authors.lastname: McCormick
authors.affiliation: Department of Pediatric Newborn Medicine, Brigham and Women's Hospital, Boston, MA, USA.
authors.forename: Mandy B
authors.initials: MB
authors.lastname: Belfort
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007234:Infant, Premature / Q000523:psychology*; D007363:Intensive Care Units, Neonatal; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010351:Patient Discharge / Q000706:statistics & numerical data; D011247:Pregnancy; D047928:Premature Birth / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology
keywords: High-risk infant; Impact on family; Impact on parents; Post-discharge; Prematurity