Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation
To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. 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 F...
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| Vydáno v: | The Journal of pediatrics Ročník 170; s. 166 - 172.e1 |
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| Hlavní autoři: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
| Médium: | Journal Article |
| Jazyk: | angličtina |
| Vydáno: |
United States
Elsevier Inc
01.03.2016
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| ISSN: | 0022-3476, 1097-6833, 1097-6833 |
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| Abstract | To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.
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 (age <19 years) or Short Form Health Survey (age ≥19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined.
Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001).
Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.
ClinicalTrials.gov: NCT00132782. |
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| AbstractList | To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.
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 (age <19 years) or Short Form Health Survey (age ≥19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined.
Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001).
Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.
ClinicalTrials.gov: NCT00132782. Objectives To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. 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 (age <19 years) or Short Form Health Survey (age ≥19 years). PedsQL data were compared with 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 < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points ( P = .004) and the emotional functioning score decreased by an average of 0.64 points ( P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age ( P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire ( P < .001) and Short Form Health Survey scores ( P < .001). Conclusions Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood. Trial registration ClinicalTrials.gov : NCT00132782. To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.OBJECTIVESTo assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.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 (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined.STUDY DESIGNCross-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 (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined.Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001).RESULTSMean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001).Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.CONCLUSIONSSurvivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood.ClinicalTrials.gov: NCT00132782.TRIAL REGISTRATIONClinicalTrials.gov: NCT00132782. To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. 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 (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined. Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001). Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood. ClinicalTrials.gov: NCT00132782. |
| Author | Shaddy, Robert Margossian, Renee Shrader, Peter Walter, Patricia Artman, Michael Feltes, Timothy Khaikin, Svetlana Stylianou, Mario Williams, Richard Colan, Steven Gaynor, J. William Newburger, Jane Atz, Andrew M. Trainor, Bethany Sleeper, Lynn Kugler, John Krischer, Jeffrey Frampton, Ann Harvey Infinger, Patricia Lai, Wyman W. McCrindle, Brian Li, Jennifer S. Barker, Piers Uzark, Karen Buckley, Lisa-Jean Handisides, Jill Hill, Kevin D. Minich, LuAnn Cook, Nakela Xu, Mingfen Gallagher, Dianne Gordon, David Webb, Catherine L. Mahony, Lynn Varni, James W. Mirarchi, Nicole Zak, Victor Kaltman, Jonathan Johnson, Julie Hunsberger, Sally A. Marino, Bradley Daniels, Kaitlyn Lambert, Linda M. McCrindle, Brian W. Lambert, Linda Galantowicz, Mark Radojewski, Elizabeth Pemberton, Victoria L. Paridon, Stephen M. Knight, Thomas J. Pearson, Gail Korsin, Rosalind Saul, J. Philip Breitbart, Roger Taylor, Holly Matherne, G. Paul Dunbar-Masterson, Carolyn Morrison, Tonia Driscoll, David J. |
| AuthorAffiliation | 7 Duke University Medical Center, Durham, NC 6 Boston Children’s Hospital, Boston, MA 11 Medical University of South Carolina, Charleston, SC 1 University of Michigan Mott Children’s Hospital, Ann Arbor, MI 8 Primary Children’s Hospital, Salt Lake City, UT 2 New England Research Institutes, Watertown, MA 5 Children’s Hospital of Philadelphia, Philadelphia, PA 10 Columbia University Medical Center, New York, NY 3 University of Toronto Hospital for Sick Children, Toronto, ON, Canada 9 National Heart, Lung, and Blood Institute, Bethesda, MD 4 Texas A&M University, College Station, TX |
| AuthorAffiliation_xml | – name: 5 Children’s Hospital of Philadelphia, Philadelphia, PA – name: 1 University of Michigan Mott Children’s Hospital, Ann Arbor, MI – name: 6 Boston Children’s Hospital, Boston, MA – name: 3 University of Toronto Hospital for Sick Children, Toronto, ON, Canada – name: 8 Primary Children’s Hospital, Salt Lake City, UT – name: 4 Texas A&M University, College Station, TX – name: 11 Medical University of South Carolina, Charleston, SC – name: 2 New England Research Institutes, Watertown, MA – name: 9 National Heart, Lung, and Blood Institute, Bethesda, MD – name: 10 Columbia University Medical Center, New York, NY – name: 7 Duke University Medical Center, Durham, NC |
| Author_xml | – sequence: 1 givenname: Karen surname: Uzark fullname: Uzark, Karen email: karenu@med.umich.edu organization: University of Michigan Mott Children's Hospital, Ann Arbor, MI – sequence: 2 givenname: Victor orcidid: 0000-0002-2954-3194 surname: Zak fullname: Zak, Victor organization: New England Research Institutes, Watertown, MA – sequence: 3 givenname: Peter surname: Shrader fullname: Shrader, Peter organization: New England Research Institutes, Watertown, MA – sequence: 4 givenname: Brian W. surname: McCrindle fullname: McCrindle, Brian W. organization: University of Toronto Hospital for Sick Children, Toronto, Ontario, Canada – sequence: 5 givenname: Elizabeth surname: Radojewski fullname: Radojewski, Elizabeth organization: University of Toronto Hospital for Sick Children, Toronto, Ontario, Canada – sequence: 6 givenname: James W. surname: Varni fullname: Varni, James W. organization: Texas A & M University, College Station, TX – sequence: 7 givenname: Kaitlyn surname: Daniels fullname: Daniels, Kaitlyn organization: Children's Hospital of Philadelphia, Philadelphia, PA – sequence: 8 givenname: Jill surname: Handisides fullname: Handisides, Jill organization: Boston Children's Hospital, Boston, MA – sequence: 9 givenname: Kevin D. surname: Hill fullname: Hill, Kevin D. organization: Duke University Medical Center, Durham, NC – sequence: 10 givenname: Linda M. orcidid: 0000-0002-4334-700X surname: Lambert fullname: Lambert, Linda M. organization: Primary Children's Hospital, Salt Lake City, UT – sequence: 11 givenname: Renee surname: Margossian fullname: Margossian, Renee organization: Boston Children's Hospital, Boston, MA – sequence: 12 givenname: Victoria L. surname: Pemberton fullname: Pemberton, Victoria L. organization: National Heart, Lung, and Blood Institute, Bethesda, MD – sequence: 13 givenname: Wyman W. surname: Lai fullname: Lai, Wyman W. organization: Columbia University Medical Center, New York, NY – sequence: 14 givenname: Andrew M. surname: Atz fullname: Atz, Andrew M. organization: Medical University of South Carolina, Charleston, SC – sequence: 15 givenname: Gail surname: Pearson fullname: Pearson, Gail – sequence: 16 givenname: Mario surname: Stylianou fullname: Stylianou, Mario – sequence: 17 givenname: Jonathan surname: Kaltman fullname: Kaltman, Jonathan – sequence: 18 givenname: Lynn surname: Sleeper fullname: Sleeper, Lynn – sequence: 19 givenname: Steven surname: Colan fullname: Colan, Steven – sequence: 20 givenname: Dianne surname: Gallagher fullname: Gallagher, Dianne – sequence: 21 givenname: Lynn surname: Mahony fullname: Mahony, Lynn – sequence: 22 givenname: Jane surname: Newburger fullname: Newburger, Jane – sequence: 23 givenname: Roger surname: Breitbart fullname: Breitbart, Roger – sequence: 24 givenname: Carolyn surname: Dunbar-Masterson fullname: Dunbar-Masterson, Carolyn – sequence: 25 givenname: Lisa-Jean surname: Buckley fullname: Buckley, Lisa-Jean – sequence: 26 givenname: Bethany surname: Trainor fullname: Trainor, Bethany – sequence: 27 givenname: Rosalind surname: Korsin fullname: Korsin, Rosalind – sequence: 28 givenname: Robert surname: Shaddy fullname: Shaddy, Robert – sequence: 29 givenname: J. William surname: Gaynor fullname: Gaynor, J. William – sequence: 30 givenname: Stephen M. surname: Paridon fullname: Paridon, Stephen M. – sequence: 31 givenname: Tonia surname: Morrison fullname: Morrison, Tonia – sequence: 32 givenname: Nicole surname: Mirarchi fullname: Mirarchi, Nicole – sequence: 33 givenname: Jennifer S. surname: Li fullname: Li, Jennifer S. – sequence: 34 givenname: Piers surname: Barker fullname: Barker, Piers – sequence: 35 givenname: Mingfen surname: Xu fullname: Xu, Mingfen – sequence: 36 givenname: J. Philip surname: Saul fullname: Saul, J. Philip – sequence: 37 givenname: Patricia surname: Infinger fullname: Infinger, Patricia – sequence: 38 givenname: Ann Harvey surname: Frampton fullname: Frampton, Ann Harvey – sequence: 39 givenname: LuAnn surname: Minich fullname: Minich, LuAnn – sequence: 40 givenname: Richard surname: Williams fullname: Williams, Richard – sequence: 41 givenname: Linda surname: Lambert fullname: Lambert, Linda – sequence: 42 givenname: Brian surname: McCrindle fullname: McCrindle, Brian – sequence: 43 givenname: Elizabeth surname: Radojewski fullname: Radojewski, Elizabeth – sequence: 44 givenname: Svetlana surname: Khaikin fullname: Khaikin, Svetlana – sequence: 45 givenname: Patricia surname: Walter fullname: Walter, Patricia – sequence: 46 givenname: Bradley surname: Marino fullname: Marino, Bradley – sequence: 47 givenname: Michael surname: Artman fullname: Artman, Michael – sequence: 48 givenname: Timothy surname: Feltes fullname: Feltes, Timothy – sequence: 49 givenname: Julie surname: Johnson fullname: Johnson, Julie – sequence: 50 givenname: Jeffrey surname: Krischer fullname: Krischer, Jeffrey – sequence: 51 givenname: G. Paul surname: Matherne fullname: Matherne, G. Paul – sequence: 52 givenname: Nakela surname: Cook fullname: Cook, Nakela – sequence: 53 givenname: John surname: Kugler fullname: Kugler, John – sequence: 54 givenname: David surname: Gordon fullname: Gordon, David – sequence: 55 givenname: David J. surname: Driscoll fullname: Driscoll, David J. – sequence: 56 givenname: Mark surname: Galantowicz fullname: Galantowicz, Mark – sequence: 57 givenname: Sally A. surname: Hunsberger fullname: Hunsberger, Sally A. – sequence: 58 givenname: Holly surname: Taylor fullname: Taylor, Holly – sequence: 59 givenname: Thomas J. surname: Knight fullname: Knight, Thomas J. – sequence: 60 givenname: Catherine L. surname: Webb fullname: Webb, Catherine L. |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/26685073$$D View this record in MEDLINE/PubMed |
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| ContentType | Journal Article |
| Contributor | Shaddy, Robert Knight, Thomas J Webb, Catherine L Paridon, Stephen M Saul, J Philip Minich, LuAnn Cook, Nakela Xu, Mingfen Gallagher, Dianne Gordon, David Mahony, Lynn Walter, Patricia Hunsberger, Sally A Mirarchi, Nicole Artman, Michael Feltes, Timothy Kaltman, Jonathan Khaikin, Svetlana Stylianou, Mario Johnson, Julie Williams, Richard Marino, Bradley Colan, Steven Matherne, G Paul Driscoll, David J Newburger, Jane Trainor, Bethany Lambert, Linda Galantowicz, Mark Sleeper, Lynn Gaynor, J William Radojewski, Elizabeth Kugler, John Krischer, Jeffrey Pearson, Gail Frampton, Ann Harvey Korsin, Rosalind Infinger, Patricia McCrindle, Brian Breitbart, Roger Taylor, Holly Barker, Piers Dunbar-Masterson, Carolyn Morrison, Tonia Buckley, Lisa-Jean Li, Jennifer S |
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| Copyright | 2016 Elsevier Inc. Elsevier Inc. Copyright © 2016 Elsevier Inc. All rights reserved. |
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| DOI | 10.1016/j.jpeds.2015.11.016 |
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| ISSN | 0022-3476 1097-6833 |
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| Keywords | CHQ-87 Fontan 2 Fontan 1 PedsQL CHD QOL SF-36 Pediatric Quality of Life Inventory Short Form Health Survey Fontan Follow-up Study Pediatric Heart Network Fontan Cross-Sectional Study Congenital heart disease Child Health Questionnaire Quality of life |
| Language | English |
| License | Copyright © 2016 Elsevier Inc. All rights reserved. |
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| Notes | ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23 ObjectType-Undefined-3 List of Pediatric Heart Network Investigators is available at www.jpeds.com (Appendix). |
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| Snippet | To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.
Cross-sectional. The Pediatric... Objectives To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. Study design... To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan.OBJECTIVESTo assess self-reported... |
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| SubjectTerms | Adolescent Adult Age Factors Cross-Sectional Studies Female Follow-Up Studies Fontan Procedure - psychology Humans Male Pediatrics Quality of Life Surveys and Questionnaires Survivors United States - epidemiology Young Adult |
| Title | Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation |
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