title: Health-related quality of life of adolescent and young adult survivors of childhood brain tumors.
abstract: OBJECTIVE
  Our aim was to expand research on predictors of health-related quality of life (HRQOL) for adolescent and young adult survivors of childhood brain tumors who are not living independently by evaluating the mediating role of family functioning in the association of disease severity/treatment late effects with survivor self-report and caregiver-proxy report of physical and emotional HRQOL.
  
  
  METHODS
  Mothers (N = 186) and their survivors living at home (N = 126) completed self-report and caregiver-proxy report of physical and emotional HRQOL. Mothers completed family functioning measures of general family functioning, caregiving demands, and caregiver distress. Medical file review and caregiver report were used to evaluate disease severity/treatment late effects.
  
  
  RESULTS
  Using structural equation models, family functioning was adjusted for sociodemographic factors. Disease severity/treatment late effects had significant direct effects on self-report and caregiver-proxy report of physical and emotional HRQOL. Family functioning had a significant direct effect on caregiver-proxy report of physical and emotional HRQOL, but these findings were not confirmed for self-report HRQOL. Model-fit indices suggested good fit of the models, but the mediation effect of family functioning was not supported.
  
  
  CONCLUSIONS
  Disease severity/treatment late effects explained self-report and caregiver-proxy report of physical and emotional HRQOL for these adolescent and young adult survivors of childhood brain tumors. Family functioning was implicated as an important factor for caregiver-proxy report only. To enhance physical and emotional HRQOL, findings underscore the importance of coordinated, multidisciplinary follow-up care for the survivors who are not living independently and their families to address treatment late effects and support family management.
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Lamia P
authors.initials: LP
authors.lastname: Barakat
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Yimei
authors.initials: Y
authors.lastname: Li
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.|School of Nursing, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Wendy L
authors.initials: WL
authors.lastname: Hobbie
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Sue K
authors.initials: SK
authors.lastname: Ogle
authors.affiliation: Drexel University, Philadelphia, PA, USA.
authors.forename: Thomas
authors.initials: T
authors.lastname: Hardie
authors.affiliation: University of Buffalo, Buffalo, NY, USA.
authors.forename: Ellen M
authors.initials: EM
authors.lastname: Volpe
authors.affiliation: West Virginia University, Morgantown, WV, USA.
authors.forename: Margo M
authors.initials: MM
authors.lastname: Szabo
authors.affiliation: The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Maureen
authors.initials: M
authors.lastname: Reilly
authors.affiliation: School of Nursing, University of Pennsylvania, Philadelphia, PA, USA.
authors.forename: Janet A
authors.initials: JA
authors.lastname: Deatrick
mesh_terms: D000293:Adolescent; D000328:Adult; D001932:Brain Neoplasms; D017028:Caregivers; D003397:Craniopharyngioma; D005195:Family Relations; D005260:Female; D005910:Glioma; D006304:Health Status; D006801:Humans; D008297:Male; D008527:Medulloblastoma; D009035:Mothers; D018242:Neuroectodermal Tumors, Primitive; D019727:Proxy; D011788:Quality of Life; D057566:Self Report; D011795:Surveys and Questionnaires; D017741:Survivors; D055815:Young Adult
keywords: adolescent and young adult cancer survivors; childhood brain tumors; family functioning; health-related quality of life; pediatric oncology
references.citation: Clin Neuropsychol. 2011 Aug;25(6):942-62
references.pmid: 21722062
references.citation: J Clin Oncol. 2000 Dec 15;18(24):4060-6
references.pmid: 11118467
references.citation: J Natl Cancer Inst. 2009 Jul 1;101(13):946-58
references.pmid: 19535780
references.citation: Health Qual Life Outcomes. 2010 Jun 28;8:63
references.pmid: 20584303
references.citation: J Adolesc Young Adult Oncol. 2011 Sep;1(3):124-132
references.pmid: 23610733
references.citation: J Child Neurol. 2009 Nov;24(11):1455-63
references.pmid: 19841433
references.citation: J Clin Oncol. 1991 Apr;9(4):592-9
references.pmid: 2066756
references.citation: Yonsei Med J. 2013 Mar 1;54(2):306-14
references.pmid: 23364961
references.citation: Health Psychol. 2014 Oct;33(10):1103-12
references.pmid: 23957900
references.citation: Neuropsychology. 2009 Nov;23(6):705-17
references.pmid: 19899829
references.citation: Semin Oncol Nurs. 2010 Feb;26(1):18-25
references.pmid: 20152575
references.citation: Int J Cancer Suppl. 1999;12:58-64
references.pmid: 10679872
references.citation: J Pediatr Hematol Oncol. 2012 Apr;34(3):194-9
references.pmid: 22441710
references.citation: Clin Psychol Rev. 2002 May;22(4):547-85
references.pmid: 12094511
references.citation: J Clin Oncol. 2005 Aug 20;23(24):5424-6
references.pmid: 16110000
references.citation: Pediatrics. 1997 Dec;100(6):958-64
references.pmid: 9374564
references.citation: J Clin Oncol. 2006 Jun 1;24(16):2536-43
references.pmid: 16735706
references.citation: Pediatr Blood Cancer. 2007 Jun 15;48(7):673-7
references.pmid: 17427232
references.citation: J Pediatr Oncol Nurs. 2011 Mar-Apr;28(2):75-82
references.pmid: 20841446
references.citation: J Pediatr Psychol. 2011 Jun;36(5):494-505
references.pmid: 19451173
references.citation: J Clin Nurs. 2008 Jul;17(14):1823-33
references.pmid: 18578756
references.citation: J Clin Oncol. 2004 Mar 15;22(6):999-1006
references.pmid: 15020603
references.citation: J Pediatr Psychol. 1995 Dec;20(6):769-84
references.pmid: 8558377
references.citation: Nurs Res. 2006 Sep-Oct;55(5):346-55
references.pmid: 16980835
references.citation: J Clin Oncol. 2009 May 10;27(14):2396-404
references.pmid: 19255309
references.citation: J Pediatr Hematol Oncol. 2008 Nov;30(11):807-14
references.pmid: 18989157
references.citation: Pediatr Blood Cancer. 2010 Dec 15;55(7):1377-85
references.pmid: 20981692
references.citation: Psychooncology. 2009 May;18(5):515-23
references.pmid: 18756585
references.citation: Clin Child Psychol Psychiatry. 2006 Jul;11(3):349-66
references.pmid: 17080773