Abstract
Introduction: Assessment of health-related quality of life (HRQL) for children with asthma in daily care may facilitate shared decision-making and contribute to patient-centred care. Pediatric HRQL is unique to children and it is essential that an instrument used in daily care has an individualised part to prioritise issues that are especially important for the particular child. We have developed a pediatric HRQL instrument that is designed as a web based game and has an individualised part (Pelican instrument).
Aim: The aim of this study was to determine the clinometric properties of the Pelican instrument.
Methods: 68 children with asthma aged 6 – 12 years were recruited. Children completed the Pelican instrument on 3 occasions within a 2-month period. Additional information was collected on various aspects, including asthma control (ACQ, C-ACT) and HRQL (Feeling Thermometer and PAQLQ).
Results: The instrument had good test-retest reliability (ICC 0.83) and internal consistency (Cronbach's α: 0.90). Moreover, the instrument was able to discriminate between children with controlled and uncontrolled asthma and we observed good correlations with the PAQLQ and Feeling Thermometer (r ≥ 0.6). Finally, the items selected by the children as “worst things about my asthma” (i.e., individualised part) were scored higher by the child than items they did not select (mean difference 0.97; scale 1-5).
Conclusions: The results indicate that the Pelican instrument is a valid and reliable instrument. The responsiveness of the instrument needs to be established. Further studies are needed to assess whether implementation of the Pelican instrument can facilitate patient-centred care.
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