Table 1 Interview guidelines for evaluation of transition program for osteogenesis imperfecta patients, family and staff

a.

Patients/parents

a.

Introduction (presentation of the study, introduction of the interviewer and time allocated to read and sign the consent forms).

b.

Please tell me about yourself/your child (the interviewer will ensure that the patient talks about his/her age, education or profession, OI type, physical disability, use of wheelchair or not, living alone or with parents or friends etc.).

c.

When were you/your child diagnosed with OI?

d.

Did you/your child stop going to the SHC? When? What was your care routine at that time?

e.

For those who have left the SHC, how do you organize your/your child’s medical care since you left the Shriners (family physician, emergency care, and other medical or surgical visits)?

f.

For those who are still followed-up at the SHC, how do you organize your/your child’s medical care?

g.

What are your experiences of the transition program of the SHC?

h.

What recommendations can you offer to improve the transition program?

i.

Please share any comments or any points to discuss that we have not talked about.

j.

End of the interview.

b.

Staff

a.

Introduction (presentation of the study, introduction of the interviewer and time allocated to read and sign the consent forms).

b.

Please tell me about your educational and professional background.

c.

Please tell me about your career since you came to the SHC. When did your involvement with the transition program begin? What were your previous roles in the transition program?

d.

What do you think about the current program?

e.

In your opinion, what should be improved in the program?

f.

How has the transition program improved over time?

g.

Please share any comments or points to discuss that we have not talked about.

h.

End of the interview.