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