Challenges and opportunities in measuring the pediatric quality of life: exemplified by research in pediatric gastroenterology.

Introduction: Quality of life (QOL) is an important patient-reported outcome measure (PROM). Assessment of QOL in children is challenging particularly because developmental age affects the accuracy of self-reports.Areas covered: This paper gives an overview and expert opinion of the factors impacting quality assessment of pediatric QOL. Given this literature is vast, we focused on QOL measurement in pediatric gastroenterological conditions as an example, but the general principles apply across childhood chronic diseases. Child developmental stage affects self-reports. Younger children are less reliable reporters implicating the need for parental proxies. However, parents may not be as cognizant of their child's internal life especially as the child grows older. Adjustment to disease (QOL initially decreases then improves) as well as the time of year (QOL improves during summer) affects reports of QOL. Furthermore, it is important to acknowledge the impact of the child's disease on caregivers and families' QOL.Expert opinion: The numerous aspects impacting pediatric QOL make assessment and measurement complex. We propose several strategies to guide this process such as assessing both self-report and parent-proxy measures, as well as considering the timing of QOL assessments.