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

doi:10.1016/j.jcf.2013.10.001

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

Pediatrics - Pulmonary, Allergy

Research output: Contribution to journal › Article › peer-review

15 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 language	English (US)
Pages (from-to)	227-234
Number of pages	8
Journal	Journal of Cystic Fibrosis
Volume	13
Issue number	2
DOIs	https://doi.org/10.1016/j.jcf.2013.10.001
State	Published - 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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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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.",

keywords = "Adolescence, Cohesiveness, Communication, Cystic fibrosis, Newborn screening, Psychosocial function",

author = "Audrey Tluczek and Anita Laxova and Adam Grieve and Anne Heun and Brown, {Roger L.} and Rock, {Michael J.} and Gershan, {William M.} and Farrell, {Philip M.}",

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 .",

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doi = "10.1016/j.jcf.2013.10.001",

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T2 - Psychosocial functioning of adolescents and young adults

AU - Tluczek, Audrey

AU - Laxova, Anita

AU - Grieve, Adam

AU - Heun, Anne

AU - Brown, Roger L.

AU - Rock, Michael J.

AU - Gershan, William M.

AU - Farrell, Philip M.

N1 - 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 .

PY - 2014/3

Y1 - 2014/3

N2 - 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.

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

Abstract

Bibliographical note

Keywords

UN SDGs

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