Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings

Abstract Objectives Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large...

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Published inValue in health Vol. 13; no. 6; pp. 778 - 786
Main Authors Baca, Christine Bower, MD, Vickrey, Barbara G., MD, MPH, Hays, Ron D., PhD, Vassar, Stefanie D., MS, Berg, Anne T., PhD
Format Journal Article
LanguageEnglish
Published Malden, USA Elsevier Inc 01.09.2010
Blackwell Publishing Inc
Subjects
Adolescent
Adult
Case-Control Studies
Child
child and adolescent health
Child Health Questionnaire (CHQ)
Children
Epilepsy
Epilepsy - psychology
Female
Health status
health-related quality of life (HRQOL)
Humans
Internal Medicine
Male
outcomes research
Parents
Parents - psychology
patient-reported outcomes
Prospective Studies
proxy
Proxy - psychology
Quality of Life
Self-Assessment
Siblings
Siblings - psychology
Sickness Impact Profile
epilepsy
patient-reported outcomes
proxy
child and adolescent health
outcomes research
Child Health Questionnaire (CHQ)
health-related quality of life (HRQOL)
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Abstract Abstract Objectives Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. Methods HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. Results There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores ( P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Conclusion Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
AbstractList Objectives: Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. Methods: initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. Results: There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P ^, 0.05). Parent-child agreement was low for cases and controls (kappa 0.27-0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Conclusion: epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives. Adapted from the source document.
OBJECTIVESSelf versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. METHODSHRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. RESULTSThere were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P≤0.05). Parent-child agreement was low for cases and controls (kappa 0.27-0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. CONCLUSIONChildren with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores ( P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
Abstract Objectives Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. Methods HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. Results There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores ( P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Conclusion Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87), and parent (CHQ-PF50) versions. There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P≤0.05). Parent-child agreement was low for cases and controls (kappa 0.27-0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5-year remission status and current antiepileptic drug use, but the case's self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
ABSTRACT Objectives:  Self versus proxy perspectives may produce different results that are important for clinical decision‐making and for assessing outcomes in research studies. We examined differences in child versus parent report of the child's health‐related quality of life (HRQOL) in a large prospective, community‐based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls. Methods:  HRQOL was assessed 8 to 9 years after initial diagnosis of epilepsy in a subset of 143 case‐control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ‐CF87), and parent (CHQ‐PF50) versions. Results:  There were no significant differences between self‐reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global items. Nevertheless, parent ratings were significantly better (higher HRQOL) for sibling controls compared with epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (P ≤ 0.05). Parent–child agreement was low for cases and controls (kappa 0.27–0.33) for three single‐item questions with the same wording on parent and child versions. Parent ratings of the case's HRQOL were often significantly associated with 5‐year remission status and current antiepileptic drug use, but the case's self‐reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child's HRQOL. Conclusion:  Children with epilepsy report HRQOL that is comparable to that of sibling controls, while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
Author Vickrey, Barbara G.
Hays, Ron D.
Vassar, Stefanie D.
Baca, Christine Bower
Berg, Anne T.
AuthorAffiliation 3 Department of Biological Sciences, Northern Illinois University, DeKalb, IL, USA
2 Department of Medicine, University of California, Los Angeles, Los Angeles, CA, USA
1 Department of Neurology, University of California, Los Angeles, Los Angeles, CA, USA
AuthorAffiliation_xml – name: 3 Department of Biological Sciences, Northern Illinois University, DeKalb, IL, USA
– name: 2 Department of Medicine, University of California, Los Angeles, Los Angeles, CA, USA
– name: 1 Department of Neurology, University of California, Los Angeles, Los Angeles, CA, USA
Author_xml – sequence: 1
  fullname: Baca, Christine Bower, MD
– sequence: 2
  fullname: Vickrey, Barbara G., MD, MPH
– sequence: 3
  fullname: Hays, Ron D., PhD
– sequence: 4
  fullname: Vassar, Stefanie D., MS
– sequence: 5
  fullname: Berg, Anne T., PhD
BackLink https://www.ncbi.nlm.nih.gov/pubmed/20561342$$D View this record in MEDLINE/PubMed
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ContentType Journal Article
Copyright International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
2010 International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
2010, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
2010, International Society for Pharmacoeconomics and Outcomes Research (ISPOR).
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– notice: 2010, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
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Issue 6
Keywords epilepsy
patient-reported outcomes
proxy
child and adolescent health
outcomes research
Child Health Questionnaire (CHQ)
health-related quality of life (HRQOL)
Language English
License http://www.elsevier.com/open-access/userlicense/1.0
2010, International Society for Pharmacoeconomics and Outcomes Research (ISPOR).
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PublicationDate September/October 2010
PublicationDateYYYYMMDD 2010-09-01
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PublicationTitle Value in health
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Publisher Elsevier Inc
Blackwell Publishing Inc
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Snippet Abstract Objectives Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in...
Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We...
ABSTRACT Objectives:  Self versus proxy perspectives may produce different results that are important for clinical decision‐making and for assessing outcomes...
OBJECTIVESSelf versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research...
Objectives: Self versus proxy perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research...
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StartPage 778
SubjectTerms Adolescent
Adult
Case-Control Studies
Child
child and adolescent health
Child Health Questionnaire (CHQ)
Children
Epilepsy
Epilepsy - psychology
Female
Health status
health-related quality of life (HRQOL)
Humans
Internal Medicine
Male
outcomes research
Parents
Parents - psychology
patient-reported outcomes
Prospective Studies
proxy
Proxy - psychology
Quality of Life
Self-Assessment
Siblings
Siblings - psychology
Sickness Impact Profile
Title Differences in Child versus Parent Reports of the Child's Health-Related Quality of Life in Children with Epilepsy and Healthy Siblings
URI https://www.clinicalkey.es/playcontent/1-s2.0-S1098301511718034
https://dx.doi.org/10.1111/j.1524-4733.2010.00732.x
https://onlinelibrary.wiley.com/doi/abs/10.1111%2Fj.1524-4733.2010.00732.x
https://www.ncbi.nlm.nih.gov/pubmed/20561342
https://search.proquest.com/docview/763166336
https://search.proquest.com/docview/818627098
https://pubmed.ncbi.nlm.nih.gov/PMC3065295
Volume 13
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