ISPOR have recently published guidelines on Pediatric Patient-Reported Outcome Instruments for Research to Support Medical Product Labeling. Whilst a useful overview, they recognise that:
“…one limitation of this task force was the narrow focus on pediatric PRO assessment in the context of research conducted for regulatory submissions. Health outcomes research outside this regulatory context was considered to be outside the scope of this report, but it should be noted that other areas of research on children and adolescents also raise important methodological challenges.”
Consequently, paediatric utility instruments are not covered, although an honourable mention goes to the CHU-9D developed in HEDS by Katherine Stevens. No mention, however, for the Adolescent Health Utility Measure (AHUM) which John Brazier was involved in developing.