Assessing quality of life in psychosocial and mental health disorders in children: a comprehensive overview and appraisal of generic health related quality of life measures

Abstract

Background: Mental health problems often arise in childhood and adolescence and can have detrimental effects on people's quality of life (QoL). Therefore, it is of great importance for clinicians, policymakers and researchers to adequately measure QoL in children. With this review, we aim to provide an overview of existing generic measures of QoL suitable for economic evaluations in children with mental health problems. Methods: First, we undertook a meta-review of QoL instruments in which we identified all relevant instruments. Next, we performed a systematic review of the psychometric properties of the identified instruments. Lastly, the results were summarized in a decision tree. Results: This review provides an overview of these 22 generic instruments available to measure QoL in children with psychosocial and or mental health problems and their psychometric properties. A systematic search into the psychometric quality of these instruments found 195 suitable papers, of which 30 assessed psychometric quality in child and adolescent mental health. Conclusions: We found that none of the instruments was perfect for use in economic evaluation of child and adolescent mental health care as all instruments had disadvantages, ranging from lack of psychometric research, no proxy version, not being suitable for young children, no age-specific value set for children under 18, to insufficient focus on relevant domains (e.g. social and emotional domains).

Measuring What Matters for Children: A Systematic Review of Frequently Used Pediatric Generic PRO Instruments

“…Research has shown that children can provide a unique perspective and be effective content experts [12]. Hence, during PROM development and item generation stage, the relevant concepts for children of different ages is obtained by the concept elicitation process done by focus groups and interviews [33]. Like the FDA PRO guidance, the ISPOR pediatric PROM assessment task force recommends incorporating responder input in developmental phases [4].…”

Towards standardization of economic evaluation research in the youth psychosocial care sector: A broad consultation in the Netherlands

“…Nevertheless, we obtained a clear prioritization of issues, which serves as guidance for further actions. Based on this, further research is commissioned by the ZonMw leading to an overview of QoL and cost questionnaires in children ( 38 ) and a database of instruments and factsheets on economic evaluation at the Netherlands Youth Institute ( 39 ).…”

Factors Associated with Discrepancy of Child-Adolescent/Parent Reported Quality of Life in the Era of COVID-19

“…The best known are the Child Health Questionnaire [ 5 ], the Child Health and Illness Profile [ 6 ], the KIDSCREEN [ 7 ], the Pediatric Quality of Life Inventory [ 8 ], and the Youth Quality of Life [ 9 ]. Measurement of the HRQoL of children under the age of eight may be more difficult to obtain, and therefore proxy versions of the instruments can be used in younger children [ 10 ]. Nevertheless, children and parents may have different perceptions of the child’s HRQoL [ 11 ], because HRQoL is a subjective concept which may be prone to measurement bias when estimated by another person [ 12 , 13 ], and because self-reports and proxy-reports are not interchangeable [ 14 ].…”

“…Nevertheless, children and parents may have different perceptions of the child’s HRQoL [ 11 ], because HRQoL is a subjective concept which may be prone to measurement bias when estimated by another person [ 12 , 13 ], and because self-reports and proxy-reports are not interchangeable [ 14 ]. Thus it is recommended to let an individual report on their own HRQoL, perhaps with the addition of a proxy version of the questionnaire [ 10 ]. Indeed, some instruments, both self and proxy-parent assessment, allow an individual to assess the level of HRQoL of another person, when the latter is not able to complete a self-questionnaire, using a proxy version [ 15 , 16 ].…”