Abstract
BackgroundThe agreement between self-reported and proxy measures of health status in ill children is not well established. This study aimed to quantify the variation in health-related quality of life (HRQOL) derived from young patients and their carers using different instruments.MethodsA hospital-based cross-sectional survey was conducted between August 2010 and March 2011. Children with meningitis, bacteremia, pneumonia, acute otitis media, hearing loss, chronic lung disease, epilepsy, mild mental retardation, severe mental retardation, and mental retardation combined with epilepsy, aged between five to 14 years in seven tertiary hospitals were selected for participation in this study. The Health Utilities Index Mark 2 (HUI2), and Mark 3 (HUI3), and the EuroQoL Descriptive System (EQ-5D) and Visual Analogue Scale (EQ-VAS) were applied to both paediatric patients (self-assessment) and caregivers (proxy-assessment).ResultsThe EQ-5D scores were lowest for acute conditions such as meningitis, bacteremia, and pneumonia, whereas the HUI3 scores were lowest for most chronic conditions such as hearing loss and severe mental retardation. Comparing patient and proxy scores (n = 74), the EQ-5D exhibited high correlation (r = 0.77) while in the HUI2 and HUI3 patient and caregiver scores were moderately correlated (r = 0.58 and 0.67 respectively). The mean difference between self and proxy-assessment using the HUI2, HUI3, EQ-5D and EQ-VAS scores were 0.03, 0.05, -0.03 and -0.02, respectively. In hearing-impaired and chronic lung patients the self-rated HRQOL differed significantly from their caregivers.ConclusionsThe use of caregivers as proxies for measuring HRQOL in young patients affected by pneumococcal infection and its sequelae should be employed with caution. Given the high correlation between instruments, each of the HRQOL instruments appears acceptable apart from the EQ-VAS which exhibited low correlation with the others.
Highlights
The agreement between self-reported and proxy measures of health status in ill children is not well established
The specific objectives of this study are to 1) quantify the variation in scores derived from young patients and their carers using different health-related quality of life (HRQOL) instruments in different health conditions; 2) provide recommendations as to whether it is appropriate to measure HRQOL of paediatric patients using their caregivers’ assessments; 3) where proxy assessment is not appropriate, identify which instrument is most suitable for use in very young children
99 caregivers participated with a corresponding patient that was either too sick or were too young to complete the questionnaire
Summary
The agreement between self-reported and proxy measures of health status in ill children is not well established. This study aimed to quantify the variation in health-related quality of life (HRQOL) derived from young patients and their carers using different instruments. There are no standard instruments for measuring health status in this population. While the HUIs and EQ5D, generic health status instruments are recognised as valid and reliable for eliciting health status in adults and children aged over four years (for the HUIs and through proxy-assessment) or 14 years (for the EQ-5D) [3,4,5,6,7], and are widely used in cost-utility analysis (CUA) [1,8], their application for younger age-groups is still controversial [1]. HRQOL obtained using different instruments can differ substantially even when measured in the same person [9,10] a phenomenon that is evident in young children. Instruments that provide widely differing outcomes might be considered less appropriate for use in these populations
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