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

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.

A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties

“…That is comparable to the reported prevalence of BTP pain in adults with chronic non-cancer pain 5 7. Similarly, BTP is common in children with cancer or life-limiting conditions (LLCs),8 9 including those with communication and/or learning difficulties as well as pre-verbal infants, for which assessment of BTP is a particular challenge. The single small study investigating BTP in a population of children with LLCs10 showed that 57% out of 27 hospitalised children with cancer who had controlled background pain reported having experienced BTP in the previous 24 hours.…”

“…The single small study investigating BTP in a population of children with LLCs10 showed that 57% out of 27 hospitalised children with cancer who had controlled background pain reported having experienced BTP in the previous 24 hours. A retrospective review of clinical records showed that younger children (aged 7–12 years) had a significantly higher risk of BTP compared with teenagers and children and that children can experience BTP even when following a pain management strategy to control background pain 9…”

“…However, the BAT only assesses the characteristics of previously diagnosed BTP, rather than diagnosing BTP. Oostendorp et al 9 aimed at generating reliable information on the nature and management of paediatric BTP from narrative clinical records. The authors piloted a BTP data extraction instrument based on a glossary of BTP terms developed by 13 clinicians.…”

Long-Term Daily Administration of Aprepitant for the Management of Intractable Nausea and Vomiting in Children With Life-Limiting Conditions: A Case Series

“…Subjective reporting of feeding and feelings of nausea from notes had to be relied upon, as well as parental/carer/patient reporting of number, volume and intensity of vomiting. 32 Subjective self or proxy reporting of efficacy may have also contributed to conformation bias, with those evaluating interventions at the time seeking to correlate the intervention with a positive rather than negative outcome. 33 In addition, lack of repeated probing and questioning around adverse effects, may have contributed to attribution of symptomology associated with disease progression to the disease rather than to the addition of aprepitant.…”

Barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people at end-of-life: a mixed methods systematic review protocol

“…ICYP’s palliative care needs often differ from those of adults, and the diversity of conditions in this population means that practitioners must manage a wide range of complex symptoms 3. A particular challenge is managing continuous ‘background’ pain as well as bouts of severe, sudden-onset ‘breakthrough pain’, both of which are common in ICYP with a terminal illness4 and are known to be underassessed and undertreated 5…”