HHS Public Access Author manuscript Author Manuscript
J Pediatr. Author manuscript; available in PMC 2017 March 01. Published in final edited form as: J Pediatr. 2016 March ; 170: 166–172.e1. doi:10.1016/j.jpeds.2015.11.016.
Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation
Author Manuscript
Karen Uzark, PhD, CPNP1, Victor Zak, PhD2, Peter Shrader, MA2, Brian W McCrindle, MD, MPH3, Elizabeth Radojewski, RN3, James W. Varni, PhD4, Kaitlyn Daniels, BSN, RN5, Jill Handisides, BSN6, Kevin D. Hill, MD, MS7, Linda M. Lambert, MSN, FNP8, Renee Margossian, MD6, Victoria L. Pemberton, RNC, MS, CCRC9, Wyman W. Lai, MD10, and Andrew M Atz, MD11,* on behalf of the Pediatric Heart Network Investigators 1University 2New
of Michigan Mott Children’s Hospital, Ann Arbor, MI
England Research Institutes, Watertown, MA
3University 4Texas
A&M University, College Station, TX
5Children’s 6Boston 7Duke
of Toronto Hospital for Sick Children, Toronto, ON, Canada
Hospital of Philadelphia, Philadelphia, PA
Children’s Hospital, Boston, MA
University Medical Center, Durham, NC
8Primary
Children’s Hospital, Salt Lake City, UT
Author Manuscript
9National
Heart, Lung, and Blood Institute, Bethesda, MD
10Columbia 11Medical
University Medical Center, New York, NY
University of South Carolina, Charleston, SC
Abstract Objectives—To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.
Author Manuscript
Study design—Cross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13–25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (CHQ-87, age < 19years) or Short Form 36 (SF-36, age ≥19 years). PedsQL data were compared with
Address correspondence to: Karen Uzark, PhD, CPNP, University of Michigan Mott Children’s Hospital, L2110 Women’s, 1500 East Medical Center Drive, Ann Arbor, MI 48109-5202, [email protected], Telephone: 734-615-9748 FAX: 734-232-3744. *List of Pediatric Heart Network Investigators is available at www.jpeds.com (Appendix). Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. The other authors declare no conflicts of interest. Portions of the study were presented as an abstract and poster at the American Heart Association Scientific Sessions, Chicago, IL, November , 2014.
Uzark et al.
Page 2
Author Manuscript
matched controls without a chronic health condition. Correlations between the measures were examined. Results—Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P
J Pediatr. Author manuscript; available in PMC 2017 March 01. Published in final edited form as: J Pediatr. 2016 March ; 170: 166–172.e1. doi:10.1016/j.jpeds.2015.11.016.
Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation
Author Manuscript
Karen Uzark, PhD, CPNP1, Victor Zak, PhD2, Peter Shrader, MA2, Brian W McCrindle, MD, MPH3, Elizabeth Radojewski, RN3, James W. Varni, PhD4, Kaitlyn Daniels, BSN, RN5, Jill Handisides, BSN6, Kevin D. Hill, MD, MS7, Linda M. Lambert, MSN, FNP8, Renee Margossian, MD6, Victoria L. Pemberton, RNC, MS, CCRC9, Wyman W. Lai, MD10, and Andrew M Atz, MD11,* on behalf of the Pediatric Heart Network Investigators 1University 2New
of Michigan Mott Children’s Hospital, Ann Arbor, MI
England Research Institutes, Watertown, MA
3University 4Texas
A&M University, College Station, TX
5Children’s 6Boston 7Duke
of Toronto Hospital for Sick Children, Toronto, ON, Canada
Hospital of Philadelphia, Philadelphia, PA
Children’s Hospital, Boston, MA
University Medical Center, Durham, NC
8Primary
Children’s Hospital, Salt Lake City, UT
Author Manuscript
9National
Heart, Lung, and Blood Institute, Bethesda, MD
10Columbia 11Medical
University Medical Center, New York, NY
University of South Carolina, Charleston, SC
Abstract Objectives—To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.
Author Manuscript
Study design—Cross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13–25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (CHQ-87, age < 19years) or Short Form 36 (SF-36, age ≥19 years). PedsQL data were compared with
Address correspondence to: Karen Uzark, PhD, CPNP, University of Michigan Mott Children’s Hospital, L2110 Women’s, 1500 East Medical Center Drive, Ann Arbor, MI 48109-5202, [email protected], Telephone: 734-615-9748 FAX: 734-232-3744. *List of Pediatric Heart Network Investigators is available at www.jpeds.com (Appendix). Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. The other authors declare no conflicts of interest. Portions of the study were presented as an abstract and poster at the American Heart Association Scientific Sessions, Chicago, IL, November , 2014.
Uzark et al.
Page 2
Author Manuscript
matched controls without a chronic health condition. Correlations between the measures were examined. Results—Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P
