Long-term follow-up of cystic fibrosis newborn screening: Psychosocial functioning of adolescents and young adults

Audrey Tluczek, Anita Laxova, Adam Grieve, Anne Heun, Roger L. Brown, Michael J. Rock, William M. Gershan, Philip M. Farrell

Research output: Contribution to journalArticlepeer-review

11 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)227-234
Number of pages8
JournalJournal of Cystic Fibrosis
Volume13
Issue number2
DOIs
StatePublished - Mar 2014

Bibliographical note

Funding Information:
We thank the families who generously volunteered their time and efforts to make this project possible. We gratefully acknowledge Dr. Rebecca Koscik for her early contributions and Dr. Caroline Racine for her assistance with data collection. Finally, we remain grateful to the entire Wisconsin Neonatal CF Screening Project team in Madison and Milwaukee. This work was supported by the Cystic Fibrosis Foundation A001-5-01 .

Keywords

  • Adolescence
  • Cohesiveness
  • Communication
  • Cystic fibrosis
  • Newborn screening
  • Psychosocial function

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