Table 2 Health care visits and testing until diagnosis among participants in IMPOWER^a

Healthcare visits prior to diagnosis

Frequent primary care/pediatrician visits

53 (44.5)

29 (52.7)

Specialty care visits

23 (19.3)

28 (50.9)

Urgent care visits

18 (15.1)

15 (27.3)

Emergency department visits

42 (35.3)

34 (61.8)

Hospitalizations

27 (22.7)

10 (18.2)

None of the above or unknown

40 (33.6)

7 (12.7)

All tests leading up to diagnosis

Upper GI with small bowel follow through

63 (52.9)

24 (43.6)

X-ray

79 (66.4)

28 (50.9)

Ultrasound

48 (40.3)

29 (52.7)

CT

32 (26.9)

49 (89.1)

Upper GI

25 (21.0)

12 (21.8)

Lower GI/barium enema

16 (13.4)

11 (20.0)

MRI

15 (12.6)

17 (30.9)

Swallow study

14 (11.8)

6 (10.9)

Endoscopy

8 (6.7)

27 (49.1)

Gastric emptying study

7 (5.9)

12 (21.8)

Other test

14 (11.7)

13 (23.6)

No test, through surgery or autopsy

14 (11.8)

2 (3.6)

Test that confirmed diagnosis

Upper GI with small bowel follow through

49 (41.2)

16 (29.1)

X-ray

11 (9.2)

2 (3.6)

Ultrasound

6 (5.0)

0 (0.0)

CT

13 (10.9)

38 (69.1)

Upper GI

11 (9.2)

0 (0.0)

Lower GI/barium enema

6 (5.0)

0 (0.0)

MRI

3 (2.5)

3 (5.5)

Swallow study

4 (3.4)

1 (1.8)

Endoscopy

1 (0.8)

1 (1.8)

Gastric emptying study

0 (0.0)

1 (1.8)

Other test

8 (6.7)

0 (0.0)

No test, through surgery or autopsy

23 (19.3)

5 (9.1)

Clinician that ordered confirmation test

Emergency Department clinician

33 (27.7)

17 (30.9)

Surgeon

22 (18.5)

7 (12.7)

Intensive care unit (ICU) clinician

16 (13.4)

0 (0.0)

Primary care/pediatrician

15 (12.6)

10 (18.2)

Gastroenterologist

15 (12.6)

19 (34.5)

Other health care provider

10 (8.4)

0 (0.0)

Unknown

5 (6.9)

2 (3.6)

Surgical procedure for malrotation and/or volvulus

107 (89.9)

45 (81.8)