Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study

doi:10.3748/wjg.v27.i20.2603

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World Journal of Gastroenterology

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Baishideng Publishing Group Inc, 7041 Koll Center Parkway, Suite 160, Pleasanton, CA 94566, USA

Retrospective Cohort Study

World J Gastroenterol. May 28, 2021; 27(20): 2603-2614
Published online May 28, 2021. doi: 10.3748/wjg.v27.i20.2603

Table 1 Demographic and clinical characteristics of patients at diagnosis, by country

	All patients (n = 300)	United Kingdom patients (n = 100)	United States patients (n = 100)	Norway patients (n = 100)
	n (%)	n (%)	n (%)	n (%)
Age at diagnosis¹
mean (SD)	38.9 (17.2)	42.4 (16.9)	39.1 (14.6)	33.1 (18.6)
Median (IQR)	36 (25.0-50.0)	41 (29.0-55.5)	38.5 (26.5-49.0)	31 (21.0-46.0)
Sex
Male	84 (28.0)	29 (29.0)	24 (24.0)	31 (31.0)
Race/Ethnicity
White/Caucasian	287 (95.7)	94 (94.0)	96 (96.0)	97 (97.0)
Black/African-American/Caribbean	2 (0.7)	1 (1.0)	0 (0.0)	1 (1.0)
Hispanic/Latino	2 (0.7)	0 (0.0)	2 (2.0)	0 (0.0)
Asian	6 (2.0)	4 (4.0)	0 (0.0)	2 (2.0)
Other	1 (0.3)	1 (1.0)	0 (0.0)	0 (0.0)
Unknown	2 (0.7)	0 (0.0)	2 (2.0)	0 (0.0)
Confirmation of diagnosis
Biopsy and serology	272 (90.7)	99 (99.0)	91 (91.0)	82 (82.0)
Biopsy only	28 (9.3)	1 (1.0)	9 (9.0)	18 (18.0)
Reason for diagnosis²
Gastrointestinal symptoms	231 (77.0)	70 (70.0)	80 (80.0)	81 (81.0)
Extraintestinal manifestations³	91 (30.3)	57 (57.0)	17 (17.0)	17 (17.0)
Family history of celiac disease	56 (18.7)	15 (15.0)	18 (18.0)	23 (23.0)
Screening for associated disorders	26 (8.7)	5 (5.0)	6 (6.0)	15 (15.0)
Family history of autoimmune disorders	13 (4.3)	0 (0.0)	3 (3.0)	10 (10.0)
Procedures performed for celiac disease-related symptoms
EGD	299 (99.7)	100 (100.0)	99 (99.0)	100 (100.0)
Bone densitometry	76 (25.3)	58 (58.0)	9 (9.0)	9 (9.0)
Colonoscopy	48 (16.0)	11 (11.0)	33 (33.0)	4 (4.0)
Abdominal imaging	9 (3.0)	2 (2.0)	4 (4.0)	3 (3.0)
Enteroscopy	2 (0.7)	1 (1.0)	1 (1.0)	0 (0.0)
Capsule endoscopy	1 (0.3)	1 (1.0)	0 (0.0)	0 (0.0)
Other	15 (5.0)	2 (2.0)	3 (3.0)	10 (10.0)
None	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
Biopsy results
Normal	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
Increased intraepithelial lymphocytes	2 (0.7)	1 (1.0)	1 (1.0)	0 (0.0)
Mild/partial villous atrophy	77 (25.7)	22 (22.0)	36 (36.0)	19 (19.0)
Subtotal villous atrophy	115 (38.3)	31 (31.0)	40 (40.0)	44 (44.0)
Total/complete villous atrophy	103 (34.3)	46 (46.0)	22 (22.0)	35 (35.0)
Other	3 (1.0)	0 (0.0)	1 (1.0)	2 (2.0)

¹One patient had date of birth missing and is not included in the calculation.

²Overall percentage may be greater than 100%, as more than one option could be indicated.

³Extraintestinal manifestations can be found in Table 2.

EGD: Esophagogastroduodenoscopy; IQR: Interquartile range; SD: Standard deviation.

Table 2 Presentation of gastrointestinal and extraintestinal manifestations at diagnosis and at follow-up visits, by country

	All patients (n = 300)		United Kingdom patients (n = 100)		United States patients (n = 100)		Norway patients (n = 100)
	At diagnosis, n (%)	At follow-up¹, n (%)	At diagnosis, n (%)	At follow-up¹, n (%)	At diagnosis, n (%)	At follow-up¹, n (%)	At diagnosis, n (%)	At follow-up¹, n (%)
Gastrointestinal manifestations²
None³	44 (14.7)	191 (63.7)	26 (26.0)	69 (69.0)	10 (10.0)	56 (56.0)	8 (8.0)	66 (66.0)
Diarrhea	147 (49.0)	100 (33.3)	44 (44.0)	35 (35.0)	54 (54.0)	45 (45.0)	49 (49.0)	20 (20.0)
Abdominal pain	124 (41.3)	93 (31.0)	26 (26.0)	23 (23.0)	46 (46.0)	45 (45.0)	52 (52.0)	25 (25.0)
Abdominal distension	12 (4.0)	11 (3.7)	0 (0.0)	0 (0.0)	7 (7.0)	9 (9.0)	5 (5.0)	2 (2.0)
Poor appetite	5 (1.7)	6 (2.0)	0 (0.0)	1 (1.0)	2 (2.0)	2 (2.0)	3 (3.0)	3 (3.0)
Constipation	38 (12.7)	47 (15.7)	6 (6.0)	6 (6.0)	15 (15.0)	29 (29.0)	17 (17.0)	12 (12.0)
Weight loss	6 (2.0)	33 (11.0)	0 (0.0)	6 (6.0)	5 (5.0)	17 (17.0)	1 (1.0)	10 (10.0)
Weight gain	44 (14.7)	27 (9.0)	10 (10.0)	0 (0.0)	25 (25.0)	24 (24.0)	9 (9.0)	3 (3.0)
Malabsorption	1 (0.3)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	1 (1.0)	0 (0.0)
Bloating	90 (30.0)	76 (25.3)	26 (26.0)	26 (26.0)	31 (31.0)	31 (31.0)	33 (33.0)	19 (19.0)
Hard stools	4 (1.3)	6 (2.0)	0 (0.0)	0 (0.0)	4 (4.0)	4 (4.0)	0 (0.0)	2 (2.0)
Mouth ulcers	3 (1.0)	2 (0.7)	2 (2.0)	0 (0.0)	0 (0.0)	1 (1.0)	1 (1.0)	1 (1.0)
Extraintestinal manifestations²
None³	72 (24.0)	153 (51.0)	37 (37.0)	71 (71.0)	24 (24.0)	38 (38.0)	11 (11.0)	44 (44.0)
Brain fog	11 (3.7)	10 (3.3)	0 (0.0)	0 (0.0)	10 (10.0)	10 (10.0)	1 (1.0)	0 (0.0)
Nutritional deficiency	104 (34.7)	108 (36.0)	27 (27.0)	27 (27.0)	34 (34.0)	59 (59.0)	43 (43.0)	22 (22.0)
Osteoporosis/osteopenia	21 (7.0)	54 (18.0)	5 (5.0)	16 (16.0)	11 (11.0)	26 (26.0)	5 (5.0)	12 (12.0)
Anemia	52 (17.3)	41 (13.7)	29 (29.0)	19 (19.0)	22 (22.0)	20 (20.0)	1 (1.0)	2 (2.0)
Malignancy	2 (0.7)	5 (1.7)	0 (0.0)	0 (0.0)	2 (2.0)	3 (3.0)	0 (0.0)	2 (2.0)
Cardiovascular disease	8 (2.7)	10 (3.3)	0 (0.0)	0 (0.0)	1 (1.0)	2 (2.0)	7 (7.0)	8 (8.0)
Infertility	4 (1.3)	5 (1.7)	0 (0.0)	2 (2.0)	4 (4.0)	3 (3.0)	0 (0.0)	0 (0.0)
Depression	11 (3.7)	12 (4.0)	1 (1.0)	2 (2.0)	8 (8.0)	8 (8.0)	2 (2.0)	2 (2.0)
Anxiety	8 (2.7)	9 (3.0)	1 (1.0)	0 (0.0)	4 (4.0)	8 (8.0)	3 (3.0)	1 (1.0)
Headaches	11 (3.7)	21 (7.0)	2 (2.0)	2 (2.0)	7 (7.0)	15 (15.0)	2 (2.0)	4 (4.0)
Neuropathy	3 (1.0)	4 (1.3)	0 (0.0)	2 (2.0)	3 (3.0)	2 (2.0)	0 (0.0)	0 (0.0)
Autoimmune disease	34 (11.3)	38 (12.7)	2 (2.0)	2 (2.0)	14 (14.0)	16 (16.0)	18 (18.0)	20 (20.0)
Skin and dental conditions	7 (2.3)	7 (2.3)	0 (0.0)	0 (0.0)	3 (3.0)	4 (4.0)	4 (4.0)	3 (3.0)
Hair loss	5 (1.7)	2 (0.7)	0 (0.0)	0 (0.0)	3 (3.0)	2 (2.0)	2 (2.0)	0 (0.0)
Liver abnormalities⁴	6 (2.0)	11 (3.7)	1 (1.0)	2 (2.0)	3 (3.0)	6 (6.0)	2 (2.0)	3 (3.0)
Musculoskeletal symptoms	28 (9.3)	38 (12.7)	5 (5.0)	7 (7.0)	9 (9.0)	11 (11.0)	14 (14.0)	20 (20.0)

¹Denotes presence at any time point during follow-up.

²Total percentage may be greater than 100%.

³Denotes no presence for the entire follow-up period.

⁴Includes elevated alanine aminotransferase, aspartate aminotransferase, or alkaline phosphatase levels.

Table 3 Descriptive characteristics of follow-up visits and endoscopies during the follow-up period, overall and by country

		Overall	United Kingdom	United States	Norway
Length of follow-up time¹ (mo)	Mean (SD)	29.9 (22.1)	26.5 (20.9)	38.7 (22.8)	24.5 (20.1)
Length of follow-up time¹ (mo)	Median (IQR)	25 (12-47)	21 (9-42)	39.5 (17-60)	16 (12-32.5)
Number of follow-up visits (per patient)	Mean (SD)	3.0 (2.3)	2.7 (2.5)	4.0 (2.4)	2.3 (1.5)
Number of follow-up visits (per patient)	Median (IQR)	2 (1-4)	2 (1-3)	4 (2-6)	2 (1-3)
Number of follow-up visits with biopsy data (per patient)	Mean (SD)	0.7 (0.8)	0.5 (0.7)	0.3 (0.5)	1.2 (0.9)
Number of follow-up visits with biopsy data (per patient)	Median (IQR)	0.5 (0-1)	0 (0-1)	0 (0-1)	1 (1-1.5)
Endoscopy with duodenal biopsy during follow-up
Yes	n (%)	150 (50.0)	42 (42.0)	26 (26.0)	82 (82.0)
No	n (%)	150 (50.0)	58 (58.0)	74 (74.0)	18 (18.0)
If ‘Yes’, number of endoscopies with duodenal biopsy during follow-up
1	n (%)	116 (77.3)	37 (88.1)	22 (84.6)	57 (69.5)
2	n (%)	22 (14.7)	3 (7.1)	4 (15.4)	15 (18.3)
3	n (%)	9 (6.0)	1 (2.4)	0 (0.0)	8 (9.8)
> 3	n (%)	3 (2.0)	1 (2.4)	0 (0.0)	2 (2.4)
Timing of endoscopy with duodenal biopsy during follow-up²
< 12 mo	n (%)	45 (30.0)	18 (42.9)	3 (11.5)	24 (29.3)
12-24 mo	n (%)	63 (42.0)	11 (26.2)	6 (23.1)	46 (56.1)
> 24 mo	n (%)	64 (42.7)	19 (45.2)	18 (69.2)	27 (32.9)

For unknown diagnosis days and months, the day was imputed to the 15^th, and the month was imputed to June.

¹Length of time from diagnosis to last follow-up available in charts, within the study period.

²Total percentage may be greater than 100%.

IQR: Interquartile range; SD: Standard deviation.

Citation: Lundin KE, Kelly CP, Sanders DS, Chen K, Kayaniyil S, Wang S, Wani RJ, Barrett C, Yoosuf S, Pettersen ES, Sambrook R, Leffler DA. Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study . World J Gastroenterol 2021; 27(20): 2603-2614
URL: https://www.wjgnet.com/1007-9327/full/v27/i20/2603.htm
DOI: https://dx.doi.org/10.3748/wjg.v27.i20.2603