To what extent are risk factors for osteoporosis and fracture measured and recorded among children with severe and complex disabilities: an audit

Introduction: Children with complex disabilities including severe motor impairment (eg cerebral palsy) are unable to undertake unassisted weight-bearing activities. Many also require nutritional support, experience stunted growth, have low sunlight exposure, suffer comorbidities such as epilepsy and are exposed to drugs such as glucocorticoids. As a result, they have a high risk of under-development of peak bone mass and frequently experience low trauma fractures. We investigated the medical records of a cohort of children with such disabilities attending on specialist service to explore the practice of (a) measuring and (b) recording risk factors for osteoporosis and fracture. Materials and methods: In total, records were available for 85 children with a range of conditions. Data were extracted about weight, height/length, degree of motor function, exercise nature and type (active vs passive), diet, feeding method and supplementation, current drugs, comorbidities, history of bone density measurement and results, relevant bone biochemistry measured and results, fractures and any medication for low bone mass. Results and Discussion: The same comprised 47 boys and 38 girls (mean age 15 years). 87.6% were gross motor classification system levels IV and V (requiring a wheelchair most/all of the time). However, relevant parameters of bone health were difficult to find in clinical records. Although 96% of motor function classifications were available, only 71% of weights were recorded in the last year, 51% of serum vitamin D levels and 56% of calcium levels since 2010. DEXA scan results were available in 14%. However, when present, there were high levels of risk factors for bone health: of those available, 62% had epilepsy and 58% taking anti-epileptics, 58% were deficient in vitamin D and 17% were hypocalcaemic. Of the DEXAs available (n=12), 92% had osteoporosis. 16% of children had a history of > 1 fracture. 56% of those with hypovitaminosis D were on supplementation (n=25) and 25% of those with hypocalcaemia were taking calcium (n=8). One child was receiving treatment with bisphosphonates. Conclusion: In these children with multiple complex needs, our results suggest that prevention of osteoporosis and fracture could receive a higher priority for monitoring and treatment, despite the many other competing priorities. We have proposed that a new bone health proforma, to be completed annually for each child, would provide a simple tool for triggering a regular review of bone health