Table 5.

Additional questions for adult patients (cohort 2b)

Question	mean answer (SD)	mean answer in words
How important is a multi-disciplinary team in the adult outpatient clinic?	1.8 (1.05)	Important
A transition program can impair the development of autonomy	3.9 (1.13)	Mostly not
I was well informed about my disease and my health at transfer	2.1 (1.22)	Mostly yes
I would have liked to have had more information about my disease and my health at transfer	2.3 (1.36)	Mostly yes
How helpful would a social worker be to assist in the transfer process?	1.8 (0.93)	Mostly helpful
How would you rate your previous transfer?	2.8 (1.36)	Satisfactory, “C”
How helpful would it have been if there was a joint outpatient clinic with pediatric and adult medicine?	2.0 (0.90)	Mostly helpful
A transition program would have influenced my professional career	3.5 (1.21)	Mostly not
How anxious did you feel due to the transfer process?	2.7 (1.27)	Unsettled but not very much
I would have liked to decide the transfer age by my own	2.6 (1.50)	Mostly agree
Which person(s) were the most important for you during your transfer?	28% pediatrician, 26% others, 15% nurses, 9% doctor’s adult clinic, 8% siblings, 8% partner, 5% social worker 1% friends
Which topics were the most important for you during transfer?	25% medications, 17% school and profession, 13% disease knowledge, 10% pregnancy, 8% drugs and alcohol, 5% body image, 5% relationships, 4% sport, 4% adherence, 3% sexuality, 3% role in the family, 3% others