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Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review

Oostendorp, LJM; Rajapakse, D; Kelly, P; Crocker, J; Dinsdale, A; Fraser, L; Bluebond-Langner, M; (2018) Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review. Journal of Child Health Care 10.1177/1367493518807312. (In press). Green open access

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Abstract

This study explored the feasibility of generating reliable information on the frequency, nature and management of breakthrough pain (BTP) in children with life-limiting conditions and life-threatening illnesses (LTIs) from narrative clinical records. In the absence of standardized ways for documenting BTP, we conducted a consensus exercise to develop a glossary of terms that could denote BTP in the records. Thirteen clinicians who contributed to the records reached consensus on 45 terms which could denote BTP, while emphasizing the importance of contextual information. The results of this approach together with guidance for improving the reliability of retrospective reviews informed a data extraction instrument. A pilot test of this instrument showed poor agreement between raters. Given the challenges encountered, we do not recommend a retrospective review of BTP using narrative records. This study highlighted challenges of data extraction for complex symptoms such as BTP from narrative clinical records. For both clinical and research purposes, the recording of complex symptoms such as BTP would benefit from clear criteria for applying definitions, a more structured format and the inclusion of validated assessment tools. This study also showed the value of consensus exercises in improving understanding and interpretation of clinical notes within a service.

Type: Article
Title: Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: Feasibility of a retrospective review
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/1367493518807312
Publisher version: https://doi.org/10.1177/1367493518807312
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Breakthrough pain, child, data collection/instrumentation, life-limiting conditions, retrospective review
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: http://discovery.ucl.ac.uk/id/eprint/10063250
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