Table 2.

Interview guide for adult and parent participants

Interview guide	Adults with cystinosis (age 18+)	Parents of adults with cystinosis
Transmutation of disease/illness	How has having cystinosis changed as you’ve gotten older? What changes in the treatment of cystinosis have impacted you?	How has having cystinosis changed as your child has gotten older? What changes in the treatment of cystinosis have impacted them?
Emerging adulthood	Do you think of yourself as an adult? How do you define adulthood?	Do you think of your child with cystinosis as an adult? How do you define adulthood?
Transitioning	What are/were your concerns moving from pediatric to adult care?	What are/were your concerns moving from pediatric to adult care?