title: Long-term follow-up of cystic fibrosis newborn screening: psychosocial functioning of adolescents and young adults.
abstract: BACKGROUND
  Long-term psychosocial outcomes of cystic fibrosis (CF) patients diagnosed through newborn screening remain unknown.
  
  
  METHODS
  This cross-sectional study compared three groups of youths (16 to 22 years): CF patients diagnosed through NBS (CF-NBS, n = 13), CF patients diagnosed through standard practice (CF-SP, n = 26) and healthy peers (H, n = 42), plus 72 of their parents. We hypothesized that adolescent psychological functioning would be mediated by parent depression and quality of parent-child communication and cohesiveness.
  
  
  RESULTS
  A path analysis showed significantly more depression among CF-NBS group parents (p = .006-.008). Parent-child cohesiveness was related to communication (p < .001). Cohesiveness and communication were associated with youth Internalizing Problems (p = .037, p = .009), Emotional Symptoms (p = 0.018, p = 0.022), and Personal Adjustment (communication only, p = 0.009). Parent depression was related to youth Personal Adjustment (p = 0.022).
  
  
  CONCLUSIONS
  CF patients report psychosocial function similar to healthy peers. Parents of children diagnosed with CF through NBS may be at risk for depressive symptoms when their children reach adolescence.
authors.affiliation: University of Wisconsin, School of Nursing, Madison, WI, United States; University of Wisconsin, School of Medicine and Public Health, Department of Pediatrics, Madison, WI, United States. Electronic address: atluczek@wisc.edu.
authors.forename: Audrey
authors.initials: A
authors.lastname: Tluczek
authors.affiliation: University of Wisconsin, School of Medicine and Public Health, Department of Pediatrics, Madison, WI, United States.
authors.forename: Anita
authors.initials: A
authors.lastname: Laxova
authors.affiliation: University of Wisconsin, School of Medicine and Public Health, Department of Psychiatry, Madison, WI, United States.
authors.forename: Adam
authors.initials: A
authors.lastname: Grieve
authors.affiliation: Iowa Health Des Moines, Blank Children's Hospital and John Stoddard Cancer Center, Des Moines, IA, United States.
authors.forename: Anne
authors.initials: A
authors.lastname: Heun
authors.affiliation: University of Wisconsin, School of Nursing, Madison, WI, United States.
authors.forename: Roger L
authors.initials: RL
authors.lastname: Brown
authors.affiliation: University of Wisconsin, School of Medicine and Public Health, Department of Pediatrics, Madison, WI, United States.
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Rock
authors.affiliation: University of Utah, School of Medicine, Department of Pediatrics, Salt Lake City, UT, United States.
authors.forename: William M
authors.initials: WM
authors.lastname: Gershan
authors.affiliation: University of Wisconsin, School of Medicine and Public Health, Department of Pediatrics, Madison, WI, United States.
authors.forename: Philip M
authors.initials: PM
authors.lastname: Farrell
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000294:Adolescent Behavior; D000328:Adult; D003430:Cross-Sectional Studies; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology; D003863:Depression / Q000209:etiology / Q000523:psychology; D018450:Disease Progression; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000379:methods / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D018570:Risk Assessment; D012944:Social Support; D014481:United States / Q000453:epidemiology
keywords: Adolescence; Cohesiveness; Communication; Cystic fibrosis; Newborn screening; Psychosocial function