Outcomes and patients’ perspectives of transition from paediatric to adult care in inflammatory bowel disease

Table 1 Demographic detail for inflammatory bowel disease patient n (%)

	IBD transition patients (n = 46)	IBD non-transition patients (n = 35)	P value
Type of IBD
Crohn’s disease	31 (67)	22 (63)	0.81
Ulcerative colitis	14 (30)	13 (37)	0.64
Indeterminate	1 (2)	0 (0)	1.00
Gender
Male	24 (52)	13 (37)	0.26
Female	22 (48)	22 (63)	0.26
Current age (yr)
18-23	26 (57)	17 (49)	0.51
23-28	20 (43)	18 (51)	0.51
Mean age at diagnosis (yr)	14	17	< 0.000005
Disease duration (yr)	10.7	5.1	< 0.000005
Current location of care
Public	22 (52)	21 (70)	0.15
Private	18 (43)	8 (27)	0.21
Both	2 (5)	1 (3)	1.00

IBD: Inflammatory bowel disease.

Table 2 Patient demographics with different ages n (%)

	As a child	Current	As a child	Current
ASGC classification1 (Postcode based)
RA1 - Major cities	28 (64)	34 (76)	20 (67)	17 (57)
RA2 - Inner regional	9 (20)	8 (18)	4 (13)	6 (20)
RA3 - Outer regional	4 (9)	2 (4)	2 (7)	6 (20)
RA4 - Remote	3 (7)	0 (0)	3 (10)	1 (3)
RA5 - Very remote	0 (0)	1 (2)	1 (3)	0 (0)
SEIFA classification (IRSAD)2 (Quintiles)
1	8 (18.5)	3 (7.0)	7 (23.3)	6 (20.0)
2	9 (21.0)	11 (25.5)	3 (10.0)	4 (13.3)
3	15 (35.0)	11 (25.5)	10 (33.3)	10 (33.3)
4	6 (14.0)	8 (19.0)	6 (20.0)	4 (13.3)
5	5 (11.5)	10 (23.0)	4 (13.3)	6 (20.0)

¹Australian Standard Geographical Classification - Remoteness Areas[22];

²Socio-economic Indexes for Areas. The Index of Relative Socio-economic Advantage and Disadvantage[23]. NB: No statistical difference was found between cohorts for ASGC or SEIFA classification. NB: Not all subjects answered every question and consequently the denominators for each response are provided.

Table 3 Inflammatory bowel disease outcomes of transition n (%)

	Transition cohort	Non-transition cohort	P value
Medication (self-reported)
5-aminosalicylic acid	19 (41)	14 (41)	1.00
Sulfasalazine
Mesalazine
Immunomodulator	30 (65)	25 (71)	0.63
Azathioprine/6	27	24
Mercaptopurine
Methotrexate	3	1
Biologic therapy (anti-TNF)	8 (17)	9 (26)	0.42
Infliximab	6	5
Adalimumab	2	4
Non-compliance	3 (7)	4 (11)	0.46
Perianal disease	9 (20)	8 (24)	0.79
Complications (Perforation, bowel obstruction, stricture)	12 (26)	5 (14)	0.27
Surgery (Resection +/- stoma, fistula with seton)	15 (33) (9 prior to transition)	10 (29)	0.81
Number of hospital admissions per patient (median)
During paediatric care	3.2	N/A
During adult care	1.5	2.1	0.67
Number of flares requiring steroids per patient (median)
Since transition	0.5	N/A
During last year	0.5	1	0.31
Extra intestinal manifestations of IBD (Arthropathy/Cutaneous/Ocular/Hepatobiliary/Metabolic bone disease)1	6 (14)	8 (24)	0.37
IBD symptoms
Physical	39 (85)	33 (94)	0.29
Psychological	16 (35)	16 (46)	0.36
Social	29 (63)	26 (76)	0.23
MDT utilisation
General Practitioner	34 (74)	25 (69)	0.80
Psychologist	2 (4)	3 (8)	0.65
Dietician	9 (20)	7 (19)	1.00
Colorectal surgeon	12 (26)	11 (31)	0.80
IBD nurse	11 (24)	19 (25)	0.01
Relationship status
Single	22 (48)	17 (49)	1.00
In a relationship	20 (43)	12 (34)	0.49
Married	4 (9)	6 (17)	0.32
Divorced	0 (0)	0 (0)	1.00
Education (level completed)
Primary	43 (100)	35 (100)	1.00
Secondary	38 (88)	27 (77)	0.23
Tertiary	19 (41)	5 (14)	0.01
TAFE (Technical and further education)	8 (17)	12 (34)	0.12
Apprenticeship/trade	6 (13)	7 (20)	0.54
Employment
Currently employed	35 (76)	21 (60)	0.15
Full-time employment	21 (60)	11 (52)	0.59
Average hours worked/week	29.8	34.2

¹Mouth ulcers were omitted. IBD: Inflammatory bowel disease.

Table 4 Transition experience and perceptions n (%)

Age at first discussion of transition (yr)
Median	18 (Range: 16-18)
Mean	17
Age at transition (yr)
Median	18 (Range: 16-19)
Mean	18
Knowledge of transition plan by patient	16 (36)
Case note documentation of transition plan	32 (86)
Patient prepared for transition
Not prepared	10 (23)
Slightly prepared	15 (34)
Strongly prepared	19 (43)
Transition felt to be structured	26 (63)
Part of transition decision making process	25 (58)
Patient reported choice of transition plan	1 (3)