Audrey Tluczek1, Anita Laxova2, Adam Grieve3, Anne Heun4, Roger L Brown5, Michael J Rock2, William M Gershan6, Philip M Farrell2. 1. 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. 2. University of Wisconsin, School of Medicine and Public Health, Department of Pediatrics, Madison, WI, United States. 3. University of Wisconsin, School of Medicine and Public Health, Department of Psychiatry, Madison, WI, United States. 4. Iowa Health Des Moines, Blank Children's Hospital and John Stoddard Cancer Center, Des Moines, IA, United States. 5. University of Wisconsin, School of Nursing, Madison, WI, United States. 6. University of Utah, School of Medicine, Department of Pediatrics, Salt Lake City, UT, United States.
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.
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.
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