Development of the Addenbrooke's MSK screening tool (AMST) for children and adolescents with cystic fibrosis.

Background: Musculoskeletal (MSK) issues are common in the paediatric population and in people with CF. There is currently no MSK screening tool for children and adolescents with CF. Methods: The protocol to develop the pGALS (paediatric Gait, Arms, Legs, Spine) was followed to create this screening tool. Paediatric respiratory and MSK physiotherapists, and paediatric respiratory doctors at a large teaching hospital were involved in the creation of this tool. This was then reviewed by paediatric respiratory doctors and physiotherapists at a second large teaching hospital with amendments added. One year data of this screening tool used on children over 7 was collected and analysed as a secondary outcome of this project. Results: There were 81.8 % more positive screens for MSK issues in the newly developed screening tool compared to the year using Manchester MSK screening tool; there were also 6 more referrals all deemed as appropriate by the services referred to. Almost half of the population screened using the developed tool were positive for an MSK issue, this was commonly related to poor posture or correctable kyphosis. Kyphosis, as measured by plumb line, appeared to be associated with negative health outcomes in this population; pectoralis major length was also associated with kyphosis and these negative health outcomes. Conclusion: The development of this tool has followed the protocol set out by the PGALs and has shown some promise with interesting initial results. This tool will need further validation before it is used in the wider paediatric CF population.

Increasing the Focus on Children's Complex and Integrated Care Needs: A Position Paper of the European Academy of Pediatrics.

There is wide variation in terminology used to refer to children living with complex needs, across clinical, research and policy settings. It is important to seek to reconcile this variation to support the effective development of programmes of care for this group of children and their families. The European Academy of Pediatrics (EAP) established a multidisciplinary Working Group on Complex Care and the initial work of this group examined how complex care is defined in the literature. A scoping review was conducted which yielded 87 papers with multiple terms found that refer to children living with complex needs. We found that elements of integrated care, an essential component of care delivery to these children, were repeatedly referred to, though it was never specifically incorporated into a term to describe complex care needs. This is essential for practice and policy, to continuously assert the need for integrated care where a complex care need exists. We propose the use of the term Complex and Integrated Care Needs as a suitable term to refer to children with varying levels of complexity who require continuity of care across a variety of health and social care settings.