Oostendorp Linda Jm, Rajapakse Dilini, Kelly Paula, Crocker Joanna, Dinsdale Andrew, Fraser Lorna, Bluebond-Langner Myra
Louis Dundas Centre for Children's Palliative Care, UCL Institute of Child Health, University College London, London, UK.
Louis Dundas Centre for Oncology Outreach and Children's Palliative Care, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
J Child Health Care. 2019 Dec;23(4):564-578. doi: 10.1177/1367493518807312. Epub 2018 Nov 21.
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.
本研究探讨了从叙述性临床记录中获取有关患有危及生命的疾病和终末期疾病（LTIs）的儿童爆发性疼痛（BTP）的频率、性质及管理的可靠信息的可行性。由于缺乏记录BTP的标准化方法，我们开展了一项共识活动，以制定一份可在记录中表示BTP的术语表。参与记录的13名临床医生就45个可表示BTP的术语达成了共识，同时强调了背景信息的重要性。这种方法的结果以及提高回顾性审查可靠性的指导意见为数据提取工具提供了依据。该工具的预测试显示评分者之间的一致性较差。鉴于所遇到的挑战，我们不建议使用叙述性记录对BTP进行回顾性审查。本研究突出了从叙述性临床记录中提取诸如BTP等复杂症状数据时所面临的挑战。出于临床和研究目的，记录诸如BTP等复杂症状将受益于清晰的定义应用标准、更结构化的格式以及纳入经过验证的评估工具。本研究还显示了共识活动在提高服务机构内对临床记录的理解和解读方面的价值。
