Development and validation of a question prompt list for parents of children with attention-deficit/hyperactivity disorder: A Delphi study

Abstract

Objectives: Question prompt lists (QPLs) are structured lists of disease and treatment-specific questions intended to encourage patient question-asking during consultations with clinicians. The aim of this study was to develop a QPL intended for use by parents of children affected by attention-deficit/hyperactivity disorder (ADHD). Methods: The QPL content (111 questions) was derived through thematic analysis of existing ADHD- and QPL-related resources. A modified Delphi method, involving a three-round web-based survey, was used to reach consensus about the QPL content. Thirty-six experts were recruited into either a professional [paediatricians, child and adolescent psychiatrists, psychologists, researchers (n =28)] or non-professional panel [parents of children diagnosed with ADHD, ADHD consumer advocates (n = 8)]. Panel members were asked to rate the importance of the QPL content using a five-point scale ranging from 'Essential' to 'Should not be included'. Results: A total of 122 questions, including 11 new questions suggested by panellists, were rated by both panels. Of these, 88 (72%) were accepted for inclusion in the QPL. Of the accepted questions, 39 were re-rated during two follow-up survey rounds and 29 (74%) were subsequently accepted for inclusion. The questions covered key topics including diagnosis, understanding ADHD, treatment, health-care team, monitoring ADHD, managing ADHD, future expectations and support and information. Conclusions: To our knowledge, this is the first ADHD-specific QPL to be developed and the first use of the Delphi method to validate the content of any QPL. It is anticipated that the QPL will assist parents in obtaining relevant, reliable information and empowering their treatment decisions by enhancing the potential for shared decision making with clinicians.