The Quality of Life Scale for Children (QoL-C)

Abstract

Purpose-There is a lack of valid and reliable generic measures of Health Related Quality of Life(HRQoL) for children under eight. This was a preliminary study to assess the psychometric properties of the newly formulated Quality of Life Scale for Children (QoL-C), which uses a pictorial response format.Method-335 primary school children completed the QoL-C on two occasions, two weeks apart. Children aged 4-7 were interviewed one-to-one whilst children aged 8-9 completed the measure as a class activity. Test re-test reliability, convergent validity and child-parent concordance were assessed.Findings-Only one child refused to complete the QoL-C, which suggests the measure is userfriendly. Test re-test reliability was moderate for the measures total score (ICC=0.48, 95% CI 0.39, 0.57) but low to fair for individual items (K from 0.13 to 0.37). Internal consistency was moderate (α=0.42 time one, 0.53 time two). A small significant correlation was found between the QoL-C and Child Health Meter in the expected direction (r=-0.32) suggesting convergent validity. There was low concordance between the children's QoL-C responses and parents responses (r=0.19) to a parallel measure.Research implications-Our results suggest that further development of this measure is needed. However,our findings indicate that one-to-one support increases the reliability of very young children's responses. The use of pictures, emoticons and minimal text used in the QoL-C should be investigated further.Value-Low parent-child concordance underscores the importance that younger children get the opportunity to share their views about their HRQoL Keywords -QoL-C, quality of life, children, measure, health, Article Classification: Research paper A growing interest in the field of Quality of Life (QoL) research has led to an expansion in the use of Health Related Quality of Life (HRQoL) measures within health services (Varni et al., 2007a). The consensus is that measures of general HRQoL should be based on several domains that are necessary for healthy functioning (Wallander et al., 2001); namely physical, mental and social wellbeing (World Health Organisation (WHO) 1948; National Institute for Clinical Excellence (NICE), 2010). The aim of generic HRQoL measures is to gain an accurate representation of an individual's perception of their current health state (Hurst et al., 1997). There are also disease specific measures that assess the impact of clinical interventions for particular chronic illnesses (Brazier and Longworth, 2011) .These measures provide data that can be used to evaluate interventions on clinical trials across different health conditions (Food and Drug Administration (FDA), 2006), inform government and organisation policies, and improve patient healthcare experiences (Varni et al., 2007b;Robinson, 1993). There is a tension between generic measures that allow comparison across multiple conditions, versus disease specific measures, that may be more sensitive to change in the particular condition being measured, but make mean...

Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures

“…Table D in the Supplementary Information (see the electronic supplementary material) describes the background concepts and development methods for measures, including whether and how children (or parents/primary caregivers in case of infants, toddlers or pre-schoolers) were involved in [37]; two cognitive interviews [6,38]; one feasibility testing [60]; and five made little or no mention of children's involvement [54,[61][62][63][64]. Twenty-three measures reported no involvement of children, relying on clinical and/or research expertise for domain/item elicitation, using statistical techniques for item selection (e.g.…”

“…The use of PROMs in childhood populations (aged ≤ 18 years) presents methodological challenges compared to application in adults. One challenge is to account for age-based biopsychosocial developmental differences between children and adults and across children of different ages [5][6][7]. Distinguishing the age or age group of the target childhood population is important for content validity or concept coverage of the childhood PROM, its capacity for child self-report, appropriate design, and the culturally appropriate age for child self-report [2].…”

Training teachers in classroom management to improve mental health in primary school children: the STARS cluster RCT

“…Our feasibility work suggested that our very young sample struggled to understand the concepts involved, which, combined with a lack of evidence to support the reliability and validity of the EQ-5D-Y among children under the age of 8 years, led us to drop the measure from the protocol. 76 Instead, a published algorithm was used to map SDQ scores to the Child Health Utility Index 9 Dimensions (CHU-9D), a generic preference-based health-utility measure that combines children's length of life and quality of life into a single summary measure 77 and thus allows comparison of interventions in a decisionmaking context. The CHU-9D was not considered for direct measurement in the study because, at the time of designing and implementing the study, no valuation system was available and the measure was not validated for use with 5-to 6-year olds.…”

“…151 Feasibility work that we conducted of a child version of the EQ-5D suggested that our very young sample struggled to understand the concepts involved and that the measure was not valid or reliable. 76 The economic evaluation was also limited by failing to consider spillover effects in teachers' quality of life. TCM has been designed to increase the well-being of teachers as well as of students, and future research should attempt to capture these effects by directly administering a preference-based quality-of-life instrument such as the EQ-5D, which is commonly used in adults.…”

Determining at What Age Children Provide Sound Self-Reports: An Illustration of the Validity-Index Approach

“…Moreover, discrepancies between child and informant ratings have commonly been found larger in younger children (about 5 to 7 years) than in older children (e.g., Yi-Frazier et al, 2016). Some researchers have taken these discrepancies as an argument for administering scales to children instead of using parent informant reports (e.g., Jozefiak, 2014; Thompson et al, 2014; Yi-Frazier et al, 2016), “there is a disconnection between parents’ and youths’ perceptions of youth HRQOL” (Yi-Frazier et al, 2016), while others suggest that discrepancies may be an indication of children’s incapability of producing reliable and valid self-report data (Woolley, Bowen, & Bowen, 2004).…”