Trends in Pediatric Palliative Care 2017; Issue #10

By Andrea Postier, PhD, MPH and Stefan Friedrichsdorf, MD.

Featured article: Friedrichsdorf, S. J., Postier, A. C., Andrews, G. S., Hamre, K. E., Steele, R., & Siden, H. (2017). Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study. J Pain Res, 10, 1841–1852.

This article addresses the topic of pain and symptom assessment and documentation in children with life-limiting, non-malignant conditions. It provides insight into gaps in pain recognition and reporting in this under-studied group.

This paper emerged from the CIHR-funded study, “Charting the Territory” (Primary Investigators: Dr. Siden and Dr. Steele). As a site Primary Investigator (PI) at one of the two US participating sites (Children’s Hospitals & Clinics of Minnesota), Dr. Stefan Friedrichsdorf was particularly interested in exploring pain and symptom reporting and management in this population. We were delighted to have the opportunity through this large multi-site collaboration to explore the topic in a large sample of children with rarer conditions that we would not otherwise have access to.

The article takes a closer look at parents’ pain reporting upon enrollment into the study, and what was recorded by their health care team in the medical record. We looked at pain and symptom reporting, management, and patient/family characteristics. We were surprised by the sizable discrepancy between parents’ pain reporting and health care provider documentation in the medical record (over 60% of pain documentation was missed). It remains unclear whether this discrepancy might have been due to lack of thorough clinical assessment, documentation, or both.

Another interesting finding was that–despite the higher likelihood of neuropathic pain in these children–medications that treat this type of pain were underutilized (e.g., adjuvant analgesia gabapentin). This finding suggests more education and research may be needed around neuropathic pain management. Another important finding was that children facing rare, life-limiting conditions were sicker and reported more pain. Unfortunately, this finding is in line with previous research on health disparities in children.

Finally, children whose pain was recorded in the medical record were more likely to be enrolled in a palliative care program. Interpretation of direction of causality was difficult, and would be an interesting research topic to explore further. In other words, does being enrolled in a palliative care program mean better documentation of pain, or is referral to a palliative care program more likely if pain is reported?