Pain in children with progressive neurodegenerative/chromosomal conditions and impairment in the central nervous system is recurrent, under-recognised and undertreated as little is known about the characterisation, prevalence and management of pain in children suffering from progressive neurologic, metabolic or chromosomal abnormalities and impairment of the central nervous system.

Stefan J Friedrichsdorf et al. conducted a cross-sectional study to determine the differences between parental and clinical pain reported in children with life-limiting conditions at the time of enrollment.  The differences in pain experiences related to the patient- or treatment-related factors were also evaluated. The study enrolled 270 children suffering from under-recognised and undertreated pain. Children recognised in this study were having prior pain experience ( n=149, 55%) as reported by their parents, less mobility with lower functional skills, had more comorbidities such as dyspnea/feeding difficulties and more often used analgesic medications as compared to pain-free children.

The results indicated that forty per cent of children with patient-reported pain (21.8% of all patients) experiences pain frequently. There was no documentation of pain assessment or analgesic treatment of patients who were experiencing pain in the medical records by the majority of clinicians (60%). A positive correlation was established between documentation of pain in the medical history and children receiving palliative care services and being prescribed with analgesics, such as acetaminophen, NSAIDs, and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.