Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey

Table 1 Characteristics of the study participants

		Crohn's Disease	Ulcerative colitis	Total	P value
Diagnosis, n (%)		392 (69)	179 (31)	571(100)	NS
Gender, M/F, n		190/162	75/78	505	NS
Age, yr, mean ± SD
	Current	33.8 ± 12.5	35.1 ± 15.1	34.2 ± 13.3	NS
	At diagnosis	24.1 ± 10.8	26.8 ± 12.5	25.0 ± 11.4	NS
Active symptoms (MIBDI A-D)		269 (69)	127 (71)	396 (69)	NS
Marital status, n (%)					NS
	Single	192 (49)	88 (49)	280 (49)
	Married	176 (45)	80 (45)	265 (45)
	Divorced	19 (5)	9 (5)	28 (5)
	Widow	3 (< 1)	2 (1)	5 (< 1)
	Separated	2 (< 1)	0 (0)	2 (< 1)
	Total	392 (100)	179 (100)	571 (100)
Occupational status, n (%)					NS
	Full time work	163 (47)	64 (40)	227 (44)
	Part time work	46 (13)	23 (14)	69 (14)
	Homemaker	9 (3)	5 (3)	14 (3)
	Student full time	47 (13)	25 (16)	72 (14)
	Student part time	38 (11)	28 (17)	66 (13)
	Retired	9 (3)	9 (6)	18 (4)
	Unemployed	15 (4)	4 (3)	19 (4)
	Disability	23 (7)	3 (2)	26 (5)
	Total	350 (100)	161 (100)	511 (100)
Level of education, n (%)					NS
	High school completion	155 (50)	68 (50)	223 (50)
	Bachelor’s degree	105 (34)	41 (30)	146 (33)
	Master’s degree	43 (14)	25 (18)	68 (15)
	Doctorate	10 (3)	2 (2)	12 (3)
	Total	313 (100)	136 (100)	449 (100)
Diagnosis informed by, n (%)					0.02
	Family doctor	25 (6)	5 (3)	30 (5)
	Gastroenterologist	306 (78)	155 (87)	461 (81)
	Nurse	1 (< 1)	2 (1)	3 (< 1)
	Surgeon	28 (7)	3 (2)	31 (5)
	Parent	12 (3)	6 (3)	18 (3)
	Someone else	20 (5)	8 (5)	28 (5)
	Total	392 (100)	179 (100)	571 (100)
Country of birth, n (%)					NS
	Israel	343 (88)	149 (83)	492 (86)
	Former Soviet Union	18 (5)	11 (6)	29 (5)
	Western Europe	12 (3)	6 (3)	18 (3)
	USA/Canada	8 (2)	9 (5)	17 (3)
	Middle East (Exc. Israel)	7 (2)	3 (2)	10 (2)
	Latin America	3 (< 1)	1 (0.6)	4 (< 1)
	Total	391 (100)	179 (100)	570 (100)
Religion, n (%)					NS
	Jewish	384 (98)	173 (97)	557 (98)
	Muslim	3 (< 1)	2 (1)	5 (1)
	Druze	2 (< 1)	3 (2)	5 (1)
	Christian	3 (< 1)	1 (< 1)	4 (< 1)
	Total	392 (100)	179 (100)	571 (100)
Family history of IBD, n (%)					NS
	1st degree relative	57 (15)	16 (9)	73 (13)
	2nd degree relative	76 (19)	40 (22)	116 (20)
	Total	133 (34)	56 (31)	189 (33)
Prior hospitalization for IBD, n (%)
	Ever	276 (70)	86 (48)	362 (63)	< 0.001
	Last year	120 (31)	43 (24)	163 (29)	NS
Prior surgery for IBD, n (%)
	Ever	130 (33)	9 (5)	139 (24)	< 0.001
	Last year	36 (17)	3 (4)	39 (14)	0.005

NS: Non-significant; MIBDI: Manitoba Inflammatory Bowel Diseases Index; IBD: Inflammatory bowel diseases.

Table 2 Mean rating (adjusted to a scale from 1-5) of the 28 questionnaire items

		(A) Importance at time of diagnosis		(B) Actual amount received		(C) Helpfulness currently
	Item	mean	± CI	mean	± CI	mean	± CI
1	Common symptoms of IBD	4.4	0.1	1.7	0.1	3.1	0.2
2	Complications that may arise from IBD	4.1	0.1	1.5	0.1	3.6	0.1
3	What is known (or not known) about the causes of IBD	3.9	0.1	1.3	0.1	3.5	0.2
4	Medication treatments for IBD	4.5	0.1	1.7	0.1	4.1	0.1
5	Possible side effects of medications	4.4	0.1	1.3	0.1	4.1	0.1
6	Surgical treatments that may be required for IBD	3.7	0.1	1.1	0.1	3.3	0.2
7	How to manage pain related to IBD	4.4	0.1	0.7	0.1	3.9	0.1
8	How to manage symptoms other than pain of IBD	4.3	0.1	0.8	0.1	3.9	0.1
9	How to adjust medications when symptoms cause more problems	4.5	0.1	0.9	0.1	4.0	0.1
10	When to contact your doctor	4.6	0.1	1.5	0.1	3.4	0.2
11	How IBD or the medications may affect their fertility	4.2	0.1	0.4	0.1	3.6	0.2
12	How to manage time away from work or school related to IBD	4.3	0.1	0.4	0.1	3.6	0.2
13	Insurance coverage if they run out of sick days at their work place	4.5	0.1	0.3	0.1	4.0	0.1
14	Changes to diet that may be helpful when the disease is active	4.6	0.1	1.5	0.1	3.9	0.1
15	Changes to diet that may be helpful when the disease is inactive	4.5	0.1	1.2	0.1	3.9	0.1
16	What foods offer the best nutritional value	4.3	0.1	0.9	0.1	3.8	0.1
17	What nutritional deficiencies you may be at risk for	4.4	0.0	1.0	0.0	3.8	0.0
18	When to use nutritional supplements	4.1	0.1	0.8	0.1	3.5	0.2
19	Patient's children risk of developing IBD at some point in their life	3.9	0.1	0.5	0.1	3.5	0.2
20	Informing family members about IBD	3.7	0.1	0.3	0.	2.3	0.2
21	Sources of support in coping with IBD	4.3	0.1	0.6	0.1	3.5	0.2
22	Long-term prognosis/outcome of IBD	4.3	0.1	0.7	0.1	3.9	0.1
23	Risk of developing cancer	4.1	0.1	0.7	0.1	3.8	0.1
24	Alternative medicine treatments for IBD	4.1	0.1	0.5	0.1	3.8	0.1
25	How to deal psychologically with the diagnosis of IBD	4.4	0.1	0.5	0.1	3.8	0.2
26	Tools for dealing with stress affecting or resulting from the disease	4.2	0.1	0.4	0.1	3.8	0.1
27	How IBD may affect military service	3.9	0.1	0.8	0.1	1.8	0.2
28	Religious topics that may be related to IBD	2.9	0.2	0.2	0.1	1.9	0.2

A: Rating of the importance of information for a friend or family member with new onset inflammatory bowel diseases; B: Rating of actual amount of information received within 2 mo following diagnosis; C: Rating of helpfulness of information currently. IBD: Inflammatory bowel diseases.

Table 3 Ratings of information domains

		Rating of importance of information domains at disease onset1
Information domain as per factor analysis		Not important, n (%)	Moderately/very important, n (%)	Mean rating 0-8 (± CIa)
Domain 1	Managing symptoms and therapy	15 (3)	503 (97)	7.1 ± 0.1
Domain 2	Stress-coping	41 (8)	475 (92)	6.9 ± 0.1
Domain 3	Complications	52 (10)	465 (90)	6.4 ± 0.1
Domain 4	Nutrition	18 (4)	499 (96)	7 ± 0.1
		Rating of helpfulness of information domains at current time2
Information domain as per factor analysis		Not helpful, n (%)	Moderately/very helpful, n (%)	Mean rating 0-8 (± CIa)
Domain 1	Managing symptoms, therapy and complications	60 (12)	420 (88)	5.9 ± 0.2
Domain 2	Nutrition	59 (12)	423 (88)	6.1 ± 0.2
Domain 3	Stress-coping	64 (13)	317 (87)	6.1 ± 0.2
Domain 4	Family, society, and religion	247 (51)	235 (49)	3.2 ± 0.3
Domain 5	Work-disability	70 (15)	412 (85)	6.1 ± 0.2
Domain 6	Long term complications	68 (14)	413 (86)	5.9 ± 0.2

¹Participants rated how important the information to be given to family member or friend during the two-month period following diagnosis with inflammatory bowel diseases on a 9-point scale with the following anchors: 0-2 (not important); 3-5 (moderately important); 6-8 (very important);

²Participants rated current helpfulness of information on a 9-point rating scale with the anchors: 0-2 (not helpful); 3-5 (moderately helpful); 6-8 (very helpful).

^a95% confidence interval.

Table 4 Number of responders matching each predetermined patient profile

	Profiles	n
	Compound
1	Patients with active disease (MIBDI A/B/C) and a history of hospitalization during the preceding 12 mo	94
2	Patients with significantly active disease (MIBDI A/B/C) treated with immunomodulators and biologic agents	52
3	Patients in remission while treated with immunomodulators and/or biologic agents	26
4	Patients in remission treated only with mesalamine or receiving no treatment	90
5	Patients aged 21-65 yr with any active disease (MIBDI A/B/C/D)	341
6	Patients with any active disease (MIBDI A/B/C/D) and a previous surgery for IBD	92
7	Patients older than age 50 yr, diagnosed during the preceding 12 mo	8
8	Patient younger than age 21 yr, diagnosed during the preceding 12 mo	21
	Simple
9	Patients diagnosed during the preceding 12 mo	92
10	Patients hospitalized during the preceding 12 mo	163
11	Patients diagnosed more than 10 yr ago	212
12	Patients who had surgery during the preceding 12 mo	39
13	Patients with highly disease activity (MIBDI A/B)	246
14	Patients diagnosed at age > 50 yr	72
15	Patients who were unemployed or received disability pension during the preceding 12 mo	45

MIBDI: Manitoba Inflammatory Bowel Diseases Index; IBD: Inflammatory bowel diseases. MIBDI A/B: Highly active disease; A/B/C: Significantly active disease (at least weekly symptoms); A/B/C/D: Refers to any active disease.

Table 5 Clinically significant disparities in rating of domains¹

			mean ± CI2 profile vs others	Deltaa
P1: Patients with active disease (MIBDI A/B/C) and a history of hospitalization during the preceding 12 mo
Domains	DC5	Work-disability	7.1 ± 0.3 vs 5.9 ± 0.2	1.2
	DC3	Stress-coping	6.7 ± 0.4 vs 5.9 ± 0.2	0.8
	DC1	managing symptoms, therapy-complications	6.5 ± 0.3 vs 5.8 ± 0.2	0.7
P2: Patients with significantly active disease (MIBDI A/B/C) treated with immunomodulators and biologics
Domains	DD4	Nutrition	7.6 ± 0.3 vs 6.9 ± 0.1	0.7
	DC3	Stress-coping	6.7 ± 0.6 vs 6 ± 0.2	0.7
	DC1	managing symptoms, therapy-complications	6.4 ± 0.4 vs 5.8 ± 0.2	0.6
	DD2	Stress-coping	7.4 ± 0.3 vs 6.8 ± 0.1	0.6
P3: Patients in remission while treated with immunomodulators and/or biologics
Domains	DD3	Complications	5.5 ± 0.8 vs 6.5 ± 0.1	-1
	DD1	managing symptoms, therapy	6.6 ± 0.7 vs 7.2 ± 0.1	-0.6
P4: Patients in remission while treated with mesalamine or receiving no treatment
Domains	DC4	Family, Society & Religion	2.3 ± 0.6 vs 3.4 ± 0.3	-1.1
	DC5	Work-disability	5.3 ± 0.6 vs 6.3 ± 0.2	-1
	DC3	Stress-coping	5.3 ± 0.6 vs 6.2 ± 0.4	-0.9
	DC1	managing symptoms, therapy-complications	5.4 ± 0.5 vs 6 ± 0.2	-0.6
P5: Patients aged 21-65 yr with any disease activity (MIBDI A/B/C/D)
Domains	DC5	Work-disability	6.5 ± 0.2 vs 5.6 ± 0.4	0.9
	DC1	managing symptoms, therapy-complications	6.1 ± 0.2 vs 5.5 ± 0.3	0.6
	DC3	Stress-coping	6.3 ± 0.3 vs 5.7 ± 0.4	0.6
P7: Patients older than age 50 yr, diagnosed during the preceding 12 mo
Domains	DC5	Work-disability	4.1 ± 2 vs 6.2 ± 0.2	-2.1
	DC3	Stress-coping	4.2 ± 1.9 vs 6.1 ± 0.2	-1.9
P8: Patients younger than age 21 yr, diagnosed during the preceding 12 mo
Domains	DC1	managing symptoms, therapy-complications	4.6 ± 1.5 vs 5.9 ± 0.1	-1.3
	DD1	managing symptoms, therapy	6 ± 1.1 vs 7.2 ± 0.1	-1.2
	DD4	Nutrition	5.9 ± 1.3 vs 7 ± 0.1	-1.1
	DD3	Complications	5.6 ± 1.1 vs 6.5 ± 0.1	-0.9
P10: patients hospitalized during the preceding 12 mo
Domains	DC5	Work-disability	6.7 ± 0.3 vs 5.9 ± 0.3	0.8
	DC1	managing symptoms, therapy-complications	6.3 ± 0.3 vs 5.7 ± 0.2	0.6
P11: Patients diagnosed more than 10 yr ago
Domains	DC5	Work-disability	5.5 ± 0.4 vs 6.5 ± 0.2	-1
P12: Patients who had surgery during the preceding 12 mo
Domains	DC5	Work-disability	6.8 ± 0.6 vs 6.1 ± 0.2	0.7
	DC1	managing symptoms, therapy-complications	6.4 ± 0.4 vs 5.8 ± 0.2	0.6
P13: Patients with high disease activity (MIBDI A/B)
Domains	DC4	Family social and religion	3.6 ± 0.4 vs 2.9 ± 0.3	0.7
	DC1	managing symptoms, therapy-complications	6.2 ± 0.2 vs 5.7 ± 0.2	0.5
P14: Patients diagnosed at age > 50 yr
Domains	DC6	Long term complications	6.9 ± 0.4 vs 5.8 ± 0.2	1.1
	DC2	Nutrition	6.9 ± 0.4 vs 5.9 ± 0.2	1
	DC1	managing symptoms, therapy-complications	6.6 ± 0.4 vs 5.8 ± 0.2	0.8
	DD3	Complications	6.9 ± 0.3 vs 6.4 ± 0.2	0.5
	DC5	Work-disability	5.3 ± 0.7 vs 6.2 ± 0.2	-0.9
P15: Patients who were unemployed (or received disability pension) during the preceding 12 mo
Domains	DC4	Family social and religion	4.2 ± 0.9 vs 3.1 ± 0.2	1.1

¹Profile 6 and 9 not included due to lack of clinically significant differences;

²95% confidence intervals;

^aP < 0.05. P: Profile; DD: Domains concerning needs at disease onset; DC: Domains concerning current needs.