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

ABSTRACT

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.

KEYWORDS:

• Quality of Life
• health-related Quality of Life
• pediatric
• parent
• proxy report
• inflammatory Bowel Disease

Declaration of interest

Miranda van Tilburg is a consultant for Mahana Therapeutics. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewers Disclosure

Peer reviewers on this manuscript have no relevant financial relationships or otherwise to disclose.

Additional information

Funding

This paper was not funded.