Transition after pediatric liver transplantation - Perceptions of adults, adolescents and parents

Table 2 Overview of questionnaire content

	Patients under the age of 18 yr (cohort 1a)	Parents (cohort 1b)	Adults (Patients > 18 yr) anticipated retrospective pre-transfer opinion (cohort 2a)	Adults (Patients > 18 yr) current opinion (cohort 2b)
Q1	I would appreciate more intense support during transfer1	I would appreciate more intense support during transfer1	I would have appreciated more intense support during transfer1	I would appreciate more intense support for liver-transplanted adolescents during transfer1
Q2	I appreciate the transition program, but I prefer to choose a day for an outpatient appointment instead of having special “adolescent outpatient clinic days”1	I appreciate the transition program, but I prefer to choose a day for an outpatient appointment instead of having special “adolescent outpatient clinic days”1	I would have appreciated the transition program, but I would have preferred to choose a day for an outpatient appointment instead of having special “adolescent outpatient clinic days”1	ND
Q3	I appreciate the transition program, but I do not want to talk to the doctor on my own1	I appreciate the transition program, but I do not want my child to talk to the doctor on his/her own1	I would have appreciated the transition program, but I would have not wanted to talk to the doctor on my own1	I do not think that it is beneficial or important for adolescents to have time to talk to the doctor alone or without their parents1
Q4	I appreciate the transition program, but I do not want to stay after my outpatient clinic appointment for collaborative activities1	I appreciate the transition program, but I do not want my child to stay after his/her outpatient clinic appointment for collaborative activities1	ND	ND
Q5	I have no interest in education or transition programs1	I have no interest in education or transition programs1	I would have had no interest in education or transition programs1	I do not think that education or transition programs are important for adolescents after liver transplantation1
Q6	At what age should a transition program should start?2	At what age should a transition program start?2	At what age should a transition program start?2	At what age should a transition program start?2
Q7	I would prefer to have seminars and educational programs outside the clinic1	I would prefer to have seminars and educational programs outside the clinic1	ND	ND
Q8	I appreciate the transition program, but….3	I appreciate the transition program, but….3	I appreciate the transition program, but….3	I appreciate the transition program, but…3
Q9	I have further suggestions for a transition program…3	I have further suggestions for a transition program…3	I have further suggestions for a transition program…3	I have further suggestions for a transition program…3
Q10	ND	ND	ND	How important is a multi-disciplinary team in the adult outpatient clinic?4
Q11	ND	ND	ND	A transition program can impair the development of autonomy1
Q12	ND	ND	ND	I was well informed about my disease and my health at transfer1
Q13	ND	ND	ND	I would have liked to have had more information about my disease and my health at transfer1
Q14	ND	ND	ND	How helpful would a social worker be to assist in the transfer process?4
Q15	ND	ND	ND	How would you rate your completed transfer?5
Q16	ND	ND	ND	How helpful would it have been if there was a joint outpatient clinic with pediatric and adult medicine?4
Q17	ND	ND	ND	A transition program would have influenced my professional career1
Q18	ND	ND		How anxious did you feel due to the transfer process?4
Q19	ND	ND	ND	I would have liked to decide the transfer age on my own1
Q20	ND	ND	ND	Which person(s) were the most important for you during your transfer?
Q21	ND	ND	ND	Which topics were the most important for you during transfer?

¹1 = I agree, 2 = I mostly agree, 3 = neither, 4 = I mostly disagree, 5 = I disagree;

²Age in years;

³Open question;

⁴1 = very, 2 = a little, 3 = neither, 4 = rather not, 5 = absolutely not;

⁵1 = excellent, 2 = good, 3 = satisfactory, 4 = sufficient, 5 = insufficient. ND: Not determined.