Determinants of disease-specific knowledge among children with inflammatory bowel disease and their parents: A multicentre study

Table 1 Demographics of inflammatory bowel disease patients participating in inflammatory bowel disease-knowledge inventory device study

Variable	Categories of variable	Patients, n (%)
Patient’s gender	Female	140 (52.0)
	Male	129 (48.0)
Parent’s gender	Female	232 (80.0)
	Male	58 (20.0)
Place of residence	Rural	172 (57.9)
	Urban	125 (41.1)
Parent’s education	Lower than secondary	48 (16.2)
	Secondary	123 (41.6)
	Higher than secondary	125 (42.2)
Disease type	CD1	196 (65.8)
	UC2	102 (34.2)
IBD family history		50 (16.8)
J-elita membership		64 (21.8)
Treatment modes
Aminosalicylates	All patients	248 (83.2)
	CD	160 (81.6)
	UC	88 (86.3)
Immunomodulators	All patients	205 (68.8)
	CD	143 (73.0)
	UC	62 (60.8)
Biologic therapy	All patients	99 (33.2)
	CD	81 (41.3)
	UC	18 (17.6)
Exclusive enteral nutrition	All patients	98 (32.9)
	CD	85 (43.4)
	UC	13 (12.7)
Dietary counselling	All patients	90 (30.2)
	CD	67 (34.2)
	UC	23 (22.5)
Psychological support	All patients	53 (17.8)
	CD	34 (17.3)
	UC	19 (18.6)
Surgical treatment	All patients	30 (10.1)
	CD	27 (13.8)
	UC	3 (2.9)
Patient’s self-assessment of knowledge	Good	120 (45.1)
	Average	125 (47.0)
	Low	21 (7.9)
Parent’s self-assessment of knowledge	Good	152 (51.7)
	Average	122 (41.5)
	Low	20 (6.8)
Sources of parent’s information about disease
Physician		241 (80.9)
Nurse		66 (22.1)
Internet		197 (66.1)
Journals		82 (27.5)
Books		77 (25.8)

¹One hundred and seventy-four questionnaires filled both by a child and a parent and 22 only by parents.

²Nity-five questionnaires filled both by a child and a parent and 7 filled only by parents. CD: Crohn’s disease; UC: Ulcerative colitis.

Table 2 Univariate linear regression models for patient’s and parent’s inflammatory bowel disease-knowledge inventory device scores

Independent variables	Categories of independent variables	Patient’s score
		B (SE)	95%CI		P value
Univariate models for patient’s IBD-KID score
Patient’s age		0.03 (0.01)	0.02 to 0.05	0.24	< 0.001
Parent’s sex		-0.69 (0.61)	-1.89 to 0.52	-0.07	0.26
Patient’s sex		-1.12 (0.48)	-2.07 to -0.17	-0.14	0.021
Place of residence		0.86 (0.48)	-0.09 to 1.82	0.11	0.076
Type of disease	UC vs CD	-0.54 (0.51)	-1.54 to 0.46	-0.07	0.29
Time from the diagnosis		0.01 (0.01)	-0.01 to 0.02	0.05	0.43
Parent’s self-assessment	Low vs medium	-2.29 (0.94)	-4.15 to -0.43	-0.15	0.016
	Good vs medium	1.63 (0.49)	0.67 to 2.59	0.21	0.001
Patient’s self-assessment	Low vs medium	-3.25 (0.90)	-5.03 to -1.48	-0.22	< 0.001
	Good vs medium	0.90 (0.49)	-0.06 to 1.86	0.11	0.067
Parents level of education	Lower than sec. vs sec.	0.23 (0.70)	-1.15 to 1.62	0.02	0.74
	Higher than sec. vs sec.	0.61 (0.53)	-0.43 to 1.66	0.08	0.25
Source: Physician	Yes vs no	-0.10 (0.63)	-1.34 to 1.14	-0.01	0.87
Source: Nurse	Yes vs no	-0.10 (0.59)	-1.26 to 1.05	-0.01	0.86
Source: Books	Yes vs no	0.61 (0.57)	-0.51 to 1.73	0.07	0.28
Source: Journals	Yes vs no	0.77 (0.54)	-0.30 to 1.84	0.09	0.15
Source: Internet	Yes vs no	1.22 (0.50)	0.23 to 2.21	0.15	0.016
J-elita Ass. Membership	Yes vs no	1.22 (0.59)	0.06 to 2.37	0.13	0.039
Close family	Yes vs no	1.16 (0.85)	-0.51 to 2.83	0.08	0.17
Family 2nd grade	Yes vs no	0.43 (0.85)	-1.24 to 2.11	0.03	0.61
Parent’s score	Yes vs no	0.42 (0.06)	0.31 to 0.53	0.41	< 0.001
Nutritional treatment	Yes vs no	1.03 (0.51)	0.01 to 2.04	0.12	0.047
Psychologist	Yes vs no	0.73 (0.63)	-0.51 to 1.98	0.07	0.25
Dietitian	Yes vs no	-0.12 (0.53)	-1.15 to 0.92	-0.01	0.82
Surgical treatment	Yes vs no	2.36 (0.80)	0.79 to 3.93	0.18	0.003
Salicylates	Yes vs no	0.19 (0.66)	-1.12 to 1.49	0.02	0.78
Immunosuppressive agent	Yes vs no	1.15 (0.52)	0.14 to 2.17	0.14	0.026
Biological agent	Yes vs no	1.29 (0.52)	0.28 to 2.31	0.15	0.013
Univariate models for parent’s IBD-KID score
Patient’s age		-0.01 (0.01)	-0.02 to 0	-0.11	0.073
Parent’s sex		-1.23 (0.54)	-2.3 to -0.15	-0.13	0.025
Patient’s sex		0.23 (0.48)	-0.73 to 1.18	0.03	0.64
Place of residence		1.45 (0.48)	0.51 to 2.39	0.18	0.003
Type of disease	UC vs CD	-0.66 (0.49)	-1.61 to 0.30	-0.08	0.18
Time from the diagnosis		0.01 (0.01)	-0.01 to 0.02	0.06	0.32
Parent’s self-assessment	Low vs medium	-2.97 (0.92)	-4.78 to -1.16	-0.19	0.001
	Good vs medium	1.15 (0.46)	0.24 to 2.07	0.15	0.014
Patient’s self-assessment	Low vs medium	-3.64 (0.89)	-5.39 to -1.88	-0.25	0.000
	Good vs medium	0.53 (0.48)	-0.43 to 1.48	0.07	0.28
Parents level of education	Lower than sec. vs sec.	-0.89 (0.67)	-2.21 to 0.43	-0.08	0.18
	Higher than sec. vs sec.	1.17 (0.50)	0.20 to 2.15	0.15	0.019
Source: physician	Yes vs no	-0.05 (0.59)	-1.20 to 1.10	0.00	0.93
Source: nurse	Yes vs no	-0.79 (0.55)	-1.88 to 0.30	-0.08	0.16
Source: books	Yes vs no	1.28 (0.52)	0.24 to 2.31	0.14	0.016
Source: journals	Yes vs no	1.31 (0.51)	0.30 to 2.32	0.15	0.011
Source: Internet	Yes vs no	0.67 (0.49)	-0.28 to 1.63	0.08	0.17
J-elita Ass. Membership	Yes vs no	1.45 (0.55)	0.36 to 2.53	0.15	0.009
Close family	Yes vs no	0.30 (0.81)	-1.29 to 1.90	0.02	0.71
Family 2nd grade	Yes vs no	0.87 (0.84)	-0.78 to 2.52	0.06	0.30
Nutritional treatment	Yes vs no	0.97 (0.49)	0 to 1.93	0.11	0.050
Psychologist	Yes vs no	0.90 (0.60)	-0.28 to 2.08	0.09	0.14
Dietitian	Yes vs no	0.19 (0.50)	-0.81 to 1.18	0.02	0.71
Surgical treatment	Yes vs no	1.27 (0.76)	-0.23 to 2.77	0.10	0.097
Salicylates	Yes vs no	0.50 (0.62)	-0.71 to 1.72	0.05	0.41
Immunosuppressive agent	Yes vs no	1.45 (0.49)	0.48 to 2.41	0.17	0.003
Biological agent	Yes vs no	1.23 (0.49)	0.27 to 2.18	0.15	0.012

B: Unstandardised regression coefficient; SE: Standard error; : Standardised regression coefficient; 95%CI: 95% confidentiality interval: sec.: Secondary education; IBD-KID: Inflammatory bowel disease-knowledge inventory device.

Table 3 Hierarchical linear regression for patient’s inflammatory bowel disease-knowledge inventory device score as an independent variables (model 3; details of model 1 and 2 are shown in Supplementary Table 2)

Independent variables		Model 3
		B (SE)	Beta	P value
Patient’s sex		-1.03 (0.44)	-0.13	0.021
Place of residence		0.41 (0.45)	0.05	0.37
Patient’s age		0.03 (0.01)	0.24	< 0.001
Patient’s self-assessment of knowledge	Low vs medium	-1.87 (1.46)	-0.12	0.20
	Good vs medium	-0.74 (0.74)	-0.09	0.32
Parent’s self-assessment of knowledge	Low vs medium	-1.24 (1.68)	-0.08	0.46
	Good vs medium	-1.66 (0.74)	-0.21	0.026
J-elita membership		0.69 (0.55)	0.07	0.21
Internet as a source of knowledge		0.67 (0.47)	0.08	0.16
Parent’s IBD-KID score		0.33 (0.06)	0.32	< 0.001
Immunosuppressive agent		-0.12 (0.51)	-0.01	0.82
Biological agent		0.26 (0.52)	0.03	0.61
Nutritional therapy		0.38 (0.48)	0.05	0.43
Surgical therapy		1.26 (0.76)	0.10	0.098
Raw/Corrected R2		0.311/0.269
F for change in R2		1.108
P value for R2 change		0.35

P value for the significance of the independent variable in the multivariate model. Dependent variable: patient’s IBD-KID score, model assessment: model 3 – df = 14, F = 7.562, P < 0.001. IBD-KID: Inflammatory bowel disease-knowledge inventory device; B: Unstandardised regression coefficient; SE: Standard error; Beta: Standardised regression coefficient; sec.: Secondary education.

Table 4 Hierarchical linear regression for the parent’s inflammatory bowel disease-knowledge inventory device score as independent variables (model 3; details of model 1 and 2 are shown in Supplementary Table 3)

Independent variables		Model 3
		B (SE)	Beta	P value
Place of residence		0.77 (0.44)	0.11	0.085
Patient’s age		-0.02 (0.01)	-0.18	0.003
Patient’s self-assessment of knowledge	Low vs medium	0.36 (1.56)	0.02	0.89
	Good vs medium	-1.06 (0.72)	-0.15	0.14
Parent’s self-assessment of knowledge	Low vs medium	-2.65 (1.73)	-0.17	0.13
	Good vs medium	-1.10 (0.71)	-0.15	0.12
J-elita membership		-0.02 (0.56)	0.00	0.97
Parent’s sex		-0.54 (0.54)	-0.06	0.32
Source books		0.66 (0.55)	0.08	0.23
Source journals		0.38 (0.55)	0.05	0.49
Parent’s level of education	Lower than sec. vs sec.	-1.99 (0.63)	-0.21	0.002
	Higher than sec. vs sec.	-1.14 (0.48)	-0.16	0.019
Immunosuppressive agent		1.85 (0.48)	0.24	< 0.001
Biological agent		0.33 (0.52)	0.04	0.53
Nutritional therapy		0.58 (0.47)	0.08	0.23
Surgical therapy		1.17 (0.73)	0.10	0.11
Raw/Corrected R2		0.238/0.185
F for change in R2		5.550
P value for R2 change		< 0.001

P value for the significance of the independent variable in the multivariate model. Dependent variable: Parent’s inflammatory bowel disease-knowledge inventory device score. Model assessment: Model 3 – df = 16, F = 4.440, P < 0.001. B: Unstandardised regression coefficient; SE: Standard error; Beta: Standardised regression coefficient; sec.: Secondary education.