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. 2014 Mar;13(2):227-34.
doi: 10.1016/j.jcf.2013.10.001. Epub 2013 Oct 21.

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

Audrey Tluczek  1 , Anita Laxova  2 , Adam Grieve  3 , Anne Heun  4 , Roger L Brown  5 , Michael J Rock  2 , William M Gershan  6 , Philip M Farrell  2
Affiliations

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

Audrey Tluczek et al. J Cyst Fibros. 2014 Mar.

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.

Keywords: Adolescence; Cohesiveness; Communication; Cystic fibrosis; Newborn screening; Psychosocial function.

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Conflict of interest statement

Conflict of Interest: None of the authors has a potential conflicts of interest or financial relationship to disclose.

Figures

Figure 1
Figure 1. Heuristic Model of Factors Associated with Youth Psychosocial Functioning*
*Child Psychological Functioning includes Personal Adjustment, Internalizing Problems, Emotional Symptoms, Inattention-Hyperactivity, and School Problems. CF-NBS= Cystic Fibrosis Diagnosis made through Newborn Screening CF-SP= Cystic Fibrosis Diagnosis made through Standard Practice at time H= Healthy Comparison Group without Cystic Fibrosis or other Chronic conditions
See this image and copyright information in PMC

References

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