Exploring and Leveraging Known Resources to Support Pediatric Clinical Outcomes Assessment (COA) Development.

Abstract

Best practices for pediatric clinical outcomes assessment (COA) development rely on guidelines that have been developed for adult populations. While some useful resources are available to support pediatric COA development, this information has primarily come from within the measurement development field. To our knowledge, no research has explored the experiences of professionals from other disciplines who interact with children on a routine basis. The goal of this research was to explore the experiences of professionals from outside of the measurement science field, who work closely with children every day, in settings relevant to the context of concept elicitation and cognitive debriefing interviews for pediatric COA development. The objectives were to 1) learn new ways to engage children in conversations regarding their health state; 2) understand how methods used in other disciplines can be used to improve the amount and quality of data emerging from pediatric qualitative interviews; and 3) generate a list of references to support pediatric COA development. Individual, one-to-one expert advice meetings were conducted over the phone or in person and lasted approximately 60 minutes in duration. One child life specialist, one speech/language pathologist, and three reading specialists were consulted, given their role in evaluating children's comprehensive abilities as well as their daily interactions with children. Two experienced COA researchers conducted the expert advice meetings using a semi-structured interview guide to provide a framework for discussion. These experts reported that factors such as interview setting, time taken to build rapport with the child, the child's comfort level, presence or absence of caregiver during the interview, the child's communication style, disease-related factors, and the child's developmental age may influence the amount and type of information that is possible to elicit during qualitative interviews. Several of these factors are also important for cognitive debriefing interviews. In addition, experts provided input that may improve the debriefing procedure, such as having the child read the text aloud in small increments, re-read text, and highlight text that they do not understand. Best practice tips from the experts were consolidated into a set of references for use by those conducting pediatric COA development research. Incorporating interdisciplinary perspectives into pediatric COA development may improve both the methods used to elicit information from children and the quality of the resulting questionnaires.