Gabriel M Ronen MD MSc

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Why Children and Parents Report QoL Differently?

• Gabriel M Ronen MD MSc
• Department of Pediatrics
• McMaster University

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Outline

• Youth parent concepts of QoL
• Concordance between youth parent
• Theoretical model(s) of factors
• Exploring factors
• Conclusions

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Rationale

• Need for surrogate decision-maker for patients
  with limited abilities
• Family role and their beliefs
• Do child and parent assessments of well-being
  QoL coincide?

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QOL in the Eyes of the Beholder

• Child parent may not share similar views about
  impact of illness Harding et al.
  2000
• Children parents may draw on different
  experiences, values... Elliott et al. 2000
  Lach et al. 2006

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QOL in the Eyes of the Beholder

• Children identified items that professionals
  parents have never considered Ronen et
  al. 1999
• Parent internal standards are for the child
  external standards Osoba 1994

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Subscales of the CHEQOL-25
Ronen et al. 2003
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Level of Agreement

• Median correlations between child and parent on
  health measures 0.4 0.8
• Agreement is dependant on visibility,
  concreteness and subjectivity of the domain High
  0.60.7 Low 0.48-0.50
  (median ICC)
• Parents tendency to score lower

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Correlations on CHEQOL-25

• N 375 child parent pairs

Verhey et al. 2009
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Discrepancy Scores
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Interim Conclusions

• Little is known about factors that explain
  variability in QoL among children their parents
• Whether children and parents rely on the same
  factors when reporting the childs QoL

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Theoretical Model in Epilepsy
Intermediate factors
Impairment
Outcome
Lach et al. 2006
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Hypothesis
Childs variables sets
Parents variables sets
Childs QoL
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Theoretical Model of Factors
variables related to parent-report
variables related to self-report
Seizure/ epilepsy factors
Child factors
Seizure/ epilepsy factors
Child factors
QoL
Co- Morbidity factors
Co- Morbidity factors
Family factors
Family factors
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Objective

• To explore differences in factors that children
  and parents draw on
• To understand the contributions and significance
  of biomedical and psychosocial variables to the
  QoL

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Population

• Children with active epilepsy families from
  across North America
• Ages 8-14 at entry to study
• Ability to understand English
• Preferred IQ gt70 determined by PPVT

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Potential Variables
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The Methods
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Regressions
N 131
Variance of variables related to
parent-report R2 Time-1 .50 Time-2 .50
Variance of variables related to
self-report R2 Time-1 .50 Time-2 .50
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Biomedical Variables
Child related variables
Parent- related variables
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Psychosocial Variables
Child related variables
Parent- related variables
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Conclusions

• We identified variables that are empirically
  associated with QoL in childhood epilepsy
• Some variables may differentially predict self-
  and proxy-reports of QoL

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Conclusions

• Both self-reports and proxy-reports constitute
  important complementary information concerning
  childrens QOL

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Conclusions

• Cross sectional studies neither lend to establish
  temporal relationships nor to study natural
  history
• Longitudinal data are needed to study relative
  importance of factors to QoL overtime

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Conclusions

• findings from this study will provide a template
  for the study of QoL in other childhood
  disabilities and chronic health disorders

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Longterm

• An understanding of emerging determinants of QoL
  will make it possible to mount intervention
  studies to minimize threats to, and to enhance,
  QoL in these populations

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The Dream Team

• David L Streiner
• Lucyna Lach
• Leonard H Verhey
• Michael H Boyle
• Charles E Cunningham
• Peter L Rosenbaum