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

Table 1 Key components of transition program

Organization/structure of outpatient appointments, support peer group formation	Dedicated liaison with a transfer-accompanying youth worker and clinical nurse specialist, working in both pediatric and adult services, for continuity and for the provision of specific information to the adolescent during transfer
	Joint outpatient clinics between adult and adolescent clinics
	“Parent-free portions” of outpatient appointments
	Adolescent-focused consultation sessions to provide information
Support peer group formation	Encouragement of networking among adolescents by offering additional non-medical programs during transition clinics
	Dedicated days in the ambulatory outpatient clinic for adolescents
Education	Seminars for education and networking outside the clinic
Transfer	Staggered transfer into adult medical care

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.

Table 3 Characteristics of patients and responders vs non-responders n (%)

	Adults (post-transfer), [n = 138 (F/M = 57/81), median age: 24.6 yr]			Adolescents (pre-transfer), [n = 57 (F/M = 24/33), median age: 14.7 yr]
	Responder	Non-responder	P value	Responder	Non-responder	P value
n	54 (39)	84 (61)		38 (67)	19 (33)
Female	15 (26)	42 (74)	0.012	17 (71)	7 (29)	0.782
Male	39 (48)	42 (52)		21 (64)	12 (36)
Survey-age (yr), mean ± SD	25.6 ± 5.70	24.1 ± 5.22	0.121	14.7 ± 2.14	14.8 ± 2.04	0.881
OLT-age (yr), mean ± SD	8.3 ± 5.60	8.6 ± 5.22	0.801	7.5 ± 5.25	6.0 ± 3.90	0.301
OLT-survey (yr), mean ± SD	16.8 ± 6.88	14.9 ± 6.82	0.111	7.2 ± 4.88	8.9 ± 3.44	0.211
BPAR, mean ± SD	1.02 ± 0.83	1.04 ± 1.20	0.481	0.84 ± 0.82	0.42 ± 0.61	0.061
BPAR outpatient, mean ± SD	0.51 ± 0.68	0.64 ± 1.11	0.751	0.55 ± 0.72	0.37 ± 0.60	0.341
#OLT, mean ± SD	1.37 ± 0.57	1.29 ± 0.51	0.271	1.16 ± 0.50	1.21 ± 0.54	0.811
Re-OLT outpatient, mean ± SD	ND	ND	ND	0.11 ± 0.31	0.16 ± 0.50	0.951
LDLT	0	0	ND	6 (16)	1 (5)	0.412
ALV	7 (13)	10 (7)	> 0.92	5 (13)	2 (11)	> 0.92
“In-Center-Transfer”	30 (61)	32 (44)	0.042	ND	ND	ND
Chronic rejection	6 (5)	10 (8)	0.822	0	0	ND

¹Mann-Whitney U test, 2-sided;

²Exacter-Fisher’s exact test, 2-sided. Survey-age: Age at day of responding the survey; OLT-age: Age at orthotopic liver transplantation; OLT-survey: Years between liver transplantation and survey; BPAR: Biopsy proven acute rejection, median amount per patient; BPAR outpatient: BPAR after first discharge after OLT; #OLT: Average number of liver transplantations per patient; Re-OLT outpatient: Amount of Re-OLT after first discharge from hospital-stay for first OLT; LDLT: Total number of living donor liver transplantations and the percentage within the responder or non-responder group; ALV: Number of acute live failures and the percentage within the responder or non-responder group; In-Center-Transfer: Patients transferred from the pediatric to adult clinic within Hannover Medical School in each group and percentage within the corresponding group; ND: Not determined.

Table 4 Answers to questions asked equally to adolescents, parents and adults

	cohort 1a mean answer (SD), n = 38	cohort 1b (parents) mean answer (SD),n = 38	P value cohort 1a vs 1b	cohort 2a (pp) mean answer (SD),n = 54	P value cohort 2a (pp) vs 1a	P value cohort 2a (pp) vs 1b (parents)	cohort 2b (cp) mean answer (SD),n = 54	P value cohort 2b (cp) vs 1a	P value cohort 2b (cp) vs 1b (parents)	P value cohort 2b (cp) vs 2a
Q 1 “appreciate more intense support during transfer”	2.111 (1.37)	1.421 (0.98)	0.01	2.151 (0.91)	NS	< 0.001	1.541 (1.19)	0.040	NS	0.001
Q2 “no special adolescent outpatient clinic days”	2.471 (1.56)	2.421 (1.64)	NS	3.411 (1.66)	0.002	0.010	-	--	-	--
Q3 “no patient-doctor alone (parent-free) time”	2.161 (1.42)	2.681 (1.66)	NS	2.911 (1.62)	0.030	NS	3.631 (1.25)	0.001	0.010	0.006
Q4 “no collaborative activities after the outpatient appointment”	2.031 (1.40)	2.291 (1.45)	NS	-	-	-	-	-	-	-
Q5 “no interest in education or transition programs”	3.551 (1.54)	4.131 (1.23)	NS	2.721 (1.34)	0.005	< 0.001	4.191 (0.91)	NS	NS	0.001
Q6 “transition program starting age”	14.082 (2.22)	13.872 (2.22)	NS	15.442 (2.01)	0.003	0.010	15.092 (1.95)	0.040	0.012	0.010
Q7 “prefer seminars outside the e clinic”	3.031 (1.40)	2.951 (1.53)	NS	-	-	-	-	-	-	-

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

²Mean age in years (standard deviation). Cohort 1a: Pre-transfer patients; Cohort 1b: Parents of pre-transfer patients; Cohort 2a (pp): Post-transfer patients from their past adolescent perspective pre-transfer; Cohort 2b (cp): Post-transfer patients from current perspective; NS: Not significant (P > 0.05), P values were calculated using Mann-Whitney U tests.

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