Box 6.

XLH Matters 2022: Expert recommendations regarding transition from paediatric to adult care for adolescents living with XLH

• Prepare young people for transition early
• To promote a gradual increase in disease knowledge and development of self-management skills
• Utilise technology platforms familiar to young adults to provide educational resources and encourage engagement
• Families may require additional support to encourage the empowerment of adolescents
• Assess transition readiness and disease knowledge regularly to continually address gaps
• Assessment tools are available worldwide, including the Ready, Steady, Go programme and TRAQ
• Adolescents and their families may require access to psychological support and resources
• Ensure collaboration between paediatric and adult clinicians to enable comprehensive planning and transition preparation
• Early communication and transfer of medical information allows adult clinicians to understand the individual needs of those in their care
• A primary coordinator/point of contact during and after transition can aid successful transfer to adult services
• Introduce adolescents to their new adult team prior to transfer
• Shared visits between paediatric and adult services may be beneficial prior to transfer
• Efforts to verify successful transfer are needed with further opportunities to engage provided if necessary