Abstract

There is increased demand for patient-reported outcome (PRO) development in a variety of illnesses for pediatric populations. A key portion of the PRO development process – qualitative interviewing – is difficult to conduct with pediatric participants without visual aids to assist children in describing their health status. The Illustrated Kid Cards are novel cartoon depictions of common symptoms and impacts associated with pediatric illness; the illustrations were developed to assist children in characterizing how they feel or behave based on concepts in the Pediatric Quality of Life Inventory (PedsQL) v4.0. After ethics approval was obtained, healthy children ages 5-12 were recruited for in-person interviews. Participants were presented with 40 illustrations and asked to describe each illustration, report on its relevance and clarity, and suggest any changes. Participant data were analyzed to determine whether the illustrations conveyed the intended concepts. Sixteen children aged 5-11 (average=8.5, standard deviation [SD]=1.8) participated in interviews. The majority of illustrations (n=29 of 40, 72.5%) were interpreted as intended by ≥70% of participants providing data. Of the illustrations that were misinterpreted, few (n=4 of 11, 36.4%) were reported to be clear by >70.0% of participants after interviewers described the illustrations’ intended meanings. The remaining illustrations – tired, headache, joint pain, difficulty in school, feeling bad about appearance, difficulty walking, and worried – were found to be unclear by >30% of participants providing data, even after the interviewer described the intended meaning of the illustration. The illustrations were generally well understood by participants. Revisions are planned for illustrations found to be unclear by >30% of participants. Future research objectives include interviews with children in various disease areas. The Illustrated Kid Cards are available in the public domain for use by all researchers.

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