Paediatric health-related quality of life: what is it and why should we measure it?

Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders

“…42 Moreover, data reported by parents are not the same as by the patient itself, and parents take into account aspects such as the future of the child, periods when the child was very ill and their report is influenced by their own well-being. 2 Finally, effect sizes found in our study are small to moderate. This should be kept in mind when interpreting and generalizing the results.…”

“…Therefore, we were used the proxy‐reported TAPQOL questionnaire for young children, although it is recommended to use the same mode of administration to be able to compare groups or changes over time . Moreover, data reported by parents are not the same as by the patient itself, and parents take into account aspects such as the future of the child, periods when the child was very ill and their report is influenced by their own well‐being . Finally, effect sizes found in our study are small to moderate.…”

“…Health-related quality of life (HRQOL) as an outcome measure has received increased attention in paediatrics over the past years. 1,2 HRQOL is defined as a multidimensional concept that refers to the impact of health and illness on an individual's quality of life, which encompasses physical, social and emotional aspects. 3 HRQOL is subjective by definition; identical health conditions in different patients may result in different ratings of HRQOL.…”

Health‐related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties

“…A challenge in using HRQOL instruments is that adaptation to different cultures and languages is needed to be useful in multisite international studies. Even though generic HRQOL instruments have been used most frequently, such as the SF-36 for adults and the PedsQL for children [7,[18][19][20], a combination of the two types of measures may provide the most optimal information [5,10,21]. Systematic reviews can be useful to select the best measurement instrument for a specific purpose [22].…”

Highlights from this issue

“…We receive outcome information like this constantly, but rarely process it fully and given that children from 7 years upwards are capable of reliably reporting their status should, I’m convinced, be doing more. There are a number of scores in use, both general (Peds QL the most widely used) and disease specific ones2 and, given the quality of health (provision and experience) flavour in several of this month’s papers (the theme to my choices) got me thinking how I could incorporate the philosophy (if not the formal scoring) better on a day to day basis.…”