How can pain care improve for children with intellectual disabilities?

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This critical opinion article examines the challenge of finding the most effective medicines to manage pain in children with intellectual disabilities and offers recommendations for clinical practice and research.

Intellectual disability can arise from many underlying diseases and may be associated with congenital anomalies, including cardiac defects, small-bowel obstructions and limb abnormalities, and with conditions such as scoliosis, gastro-esophageal reflux disease, spasticity and epilepsy. These conditions and any necessary surgery can themselves be sources of pain. Epilepsy often requires long-term treatment with antiepileptic drugs, which can potentially interact with pain medicines.

Children with intellectual disabilities often cannot communicate pain to caregivers. Although they are at high risk of experiencing pain, ethical considerations often mean researchers must exclude them from pain-management trials. The authors call on prescribers, researchers, patient organizations, pharmaceutical companies and policy makers to study evidence-based, safe and effective drug treatment for these children through properly designed studies. In the meantime, they say parents and clinicians must use validated pain assessment tools such as the revised FLACC scale.