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Establishing consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for typically developing children and young people (8-25yrs) with life limiting and life-threatening conditions: an international e-Delphi Study of expert healthcare professionals

Establishing consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for typically developing children and young people (8-25yrs) with life limiting and life-threatening conditions: an international e-Delphi Study of expert healthcare professionals
Establishing consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for typically developing children and young people (8-25yrs) with life limiting and life-threatening conditions: an international e-Delphi Study of expert healthcare professionals
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.
breakthrough pain, cancer, life-limiting conditions, life-threatening conditions, paediatric pain, pain assessment, palliative care
2227-9067
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Turner, Georgia
c6ec5b1f-66c5-4c88-852c-83568b87857b
Anderson, Anna-Karenia
04b7696e-276e-4b9b-b1c0-c32233886084
Harrop, Emily
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Bailey, Simon
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Johnson, Margaret
a6a124f3-678a-4136-88e6-f67fccde7934
Mott, Christine
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Schoth, Daniel Eric
a2e6b650-4f5d-4f64-a665-0270fef11611
Hayden, James
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Rajapakse, Dilini
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Renton, Kate
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Carter, Bernie
f7008227-46f4-4521-90e9-34188ed628db
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Turner, Georgia
c6ec5b1f-66c5-4c88-852c-83568b87857b
Anderson, Anna-Karenia
04b7696e-276e-4b9b-b1c0-c32233886084
Harrop, Emily
a4b29888-be35-4f76-93fc-bb0b437d54e0
Bailey, Simon
0841f9a7-dfe7-48dd-9e97-5075ec6cc035
Johnson, Margaret
a6a124f3-678a-4136-88e6-f67fccde7934
Mott, Christine
6d242373-b932-4ddc-9478-15107de4209a
Schoth, Daniel Eric
a2e6b650-4f5d-4f64-a665-0270fef11611
Hayden, James
6b71d115-c182-43d6-a527-55444824e696
Rajapakse, Dilini
27d8a931-1725-429c-b1d3-4d62d66deefd
Renton, Kate
d5e54a1b-d13e-4f6a-8ae7-3c066676b08c
Carter, Bernie
f7008227-46f4-4521-90e9-34188ed628db

Liossi, Christina, Turner, Georgia, Anderson, Anna-Karenia, Harrop, Emily, Bailey, Simon, Johnson, Margaret, Mott, Christine, Schoth, Daniel Eric, Hayden, James, Rajapakse, Dilini, Renton, Kate and Carter, Bernie (2025) Establishing consensus on the Breakthrough Pain Assessment Questionnaire-Self Report (BTPAQ-SR) for typically developing children and young people (8-25yrs) with life limiting and life-threatening conditions: an international e-Delphi Study of expert healthcare professionals. Children, 12 (12), [1627]. (doi:10.3390/children12121627).

Record type: Article

Abstract

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.

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Accepted/In Press date: 25 November 2025
Published date: 30 November 2025
Keywords: breakthrough pain, cancer, life-limiting conditions, life-threatening conditions, paediatric pain, pain assessment, palliative care

Identifiers

Local EPrints ID: 508049
URI: http://eprints.soton.ac.uk/id/eprint/508049
ISSN: 2227-9067
PURE UUID: fd9a8cfa-05db-42ca-a529-66852306228a
ORCID for Christina Liossi: ORCID iD orcid.org/0000-0003-0627-6377
ORCID for Georgia Turner: ORCID iD orcid.org/0009-0002-8600-248X

Catalogue record

Date deposited: 12 Jan 2026 17:52
Last modified: 16 Jan 2026 18:29

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Contributors

Author: Georgia Turner ORCID iD
Author: Anna-Karenia Anderson
Author: Emily Harrop
Author: Simon Bailey
Author: Margaret Johnson
Author: Christine Mott
Author: Daniel Eric Schoth
Author: James Hayden
Author: Dilini Rajapakse
Author: Kate Renton
Author: Bernie Carter

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