Aim: To describe and compare the characteristics of acute fracture and chronic non-fracture pain in children with osteogenesis imperfecta (OI). Methods: A questionnaire about fracture-related pain and prospective 7-d diary about non-fracture-related pain was completed by a random sample of 35 children aged 5-18 from a UK national OI service. Main outcome measures included pain intensity, location, frequency, quality, coping strategies and analgesia use. Results: Most children reported moderate to severe pain associated with fractures and less intense non-fracture pain (p < 0.001). Pain intensity was significantly higher in the children who used analgesics (p < 0.001). The quality of fracture and non-fracture pain differed only for affective words, which were less frequently used to describe non-fracture pain (p = 0.002). More activities of daily living (ADLs) were affected by fracture pain than by non-fracture pain (p < 0.001). Children reported more frequent use of approach coping strategies with fracture pain and more frequent use of distraction for non-fracture pain (p < 0.01). There were no differences in non-fracture pain intensity, duration, quality, effect on ADLs or coping between children who did or did not take bisphosphonates. Conclusions: Pain is a common occurrence for children with OI and is both acute and chronic in nature, interfering with children’ s daily living activities. OI pain may not be optimally treated because many children experienced moderate to severe pain despite use of analgesics and/or coping strategies.
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