Engaging the Voices of Children: A Scoping Review of How Children and Adolescents Are Involved in the Development of Quality-of-Life–Related Measures

Value in Health
April 2021 Volume 24 Issue 4 p463-604
https://www.valueinhealthjournal.com/current

 

PATIENT-REPORTED OUTCOMES
Engaging the Voices of Children: A Scoping Review of How Children and Adolescents Are Involved in the Development of Quality-of-Life–Related Measures
Jessica Willis, Dena Zeratkaar, Julia ten Hove, Peter Rosenbaum, Gabriel M. Ronen
Published online: December 28, 2020
Highlights
:: Children and adolescents should participate in content development of patient-reported outcomes about themselves.
:: Focus groups and interviews are the most frequently used qualitative methods to elicit the content of interest.
:: Play activities help children communicate their experiences and feelings.
:: There is limited consistency in how researchers undertake and report their methodologies.
:: This review highlights the value of dedicated qualitative papers to report development of patient-reported outcomes.
Conclusions
Researchers frequently involve children and adolescents in qualitative methods when developing QoL-related measures; however, there is little information about the methods used. Better reporting of methodology, improved dissemination of methods guidelines, and research into optimal ways of including children and adolescents in the process of instrument development would be useful.