Establishing Consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for Typically Developing Children and Young People (8-25 yrs) with Life-Limiting and Life-Threatening Conditions: An International e-Delphi Study of Expert Healthcare Professionals.
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BACKGROUND/OBJECTIVES: Breakthrough pain (BTP) is commonly experienced by children and young people with life-limiting and life-threatening conditions. While over 50 tools exist for the assessment of breakthrough pain in adults, there is currently no standardised measure designed for use in paediatrics. To address this gap, the multi-phase BEACON clinical trial aims to develop the Breakthrough Pain Assessment Questionnaire (BTPAQ) for use with children and young people with life-limiting and life-threatening conditions aged 3 months to 25 years. The goal of the current study was to refine the self-report version (BTPAQ-SR) of the questionnaire through an international, sequential, electronic-Delphi process. METHODS: Healthcare professionals with at least three years of clinical experience working with children and young people with life-limiting and life-threatening conditions were invited to complete an anonymous online survey. The alpha version of the BTPAQ-SR was developed from systematic reviews, qualitative interviews, and the BEACON Steering Group. It had a diagnostic algorithm (Part A) and 18 items (Part B); however, items that included multiple descriptors or options were separated and presented individually, resulting in 49 survey items being presented to participants. Participants rated the importance of all survey items to assess breakthrough pain and the frequency of presentation for a subset of 37 items. RESULTS: Fifty-three healthcare professionals from nine different countries were recruited, the majority of whom were physicians or nurses. Of the 49 survey items, 46 (93.8%) reached the ≥70% consensus threshold for importance, and 31 (83.8%) of 37 reached consensus for frequency. In total, 42 survey items reached consensus for both importance and frequency. CONCLUSIONS: The findings from this study support the clinical need for the BTPAQ-SR, confirm its conceptual foundation, and justify its continued development. Next steps include cognitive interviews with children and young people and introduction to clinical care to assess the psychometric properties of the BTPAQ-SR, including its clinical utility, reliability, and validity.