Exploring pain interference and self-perceived health status in children with Osteogenesis Imperfecta - A cross-sectional study

Abstract Purpose To explore presence of chronic pain, pain interference in daily life, and self-perceived health status in children with Osteogenesis Imperfecta (OI). Methods Children with OI, aged 6–18 years, were recruited consecutively to this cross-sectional study. Participants answered a standardised interview including five pre-structured questions, Numerical Rating Scale (NRS), the Pain Interference Index, and the PROMIS-25. Results Twenty-eight children (median: 11 years, IQR 6) with OI type I, III, or IV participated. Pain was present in 27 of 28 children, and interfered in their everyday life regardless of OI-type, sex, and age. The median NRS for average pain intensity was 4 (IQR 2), the median for pain frequency was 2–3 times/week, and the median frequency of school absence due to pain was 2–3 times per month. Pain in the feet was more frequently reported in children with type I (p = 0.032), and pain in the hip was more often reported in children ≥ 13 years (p = 0.011). Self-perceived health status for mobility was lower than the general population, and lowest for children with type III (p = 0.016). Pain interference was associated with children’s self-perceived health status (rs=0.84, p < 0.001). Conclusion Almost all children experienced pain, which interfered in children’s everyday lives, affected participation in various activities and was associated with reduced self-perceived health status. If children avoid physical activities because of pain, it might cause a vicious circle of inactivity, which further decreases bone density and increase the risk of fractures. The results emphasize the importance to offer adequate pain reducing interventions.