Chapter 19: Inflammatory Bowel Disease

The Burden of Digestive Diseases in the United States

James E. Everhart, M.D., M.P.H.

The two inflammatory bowel diseases (IBD) are Crohn’s disease (also known as regional enteritis) and ulcerative colitis (UC). Adding the data for the two results in the number of ambulatory care visits, hospital discharge diagnoses, and deaths for all IBD. (Tables and figures also are shown for all IBD, but not discussed.) Most care for these chronic diseases occurs in the outpatient setting, with hospitalizations reserved for complications that might require surgery. Mortality is relatively uncommon, such that death due to GERD is more common than death due to IBD. The significant suffering from IBD is not captured well in such statistics.

CROHN’S DISEASE

In 2004, Crohn’s disease resulted in more than 800,000 first-listed ambulatory care visits and more than 1 million all-listed visits (Table 1). Although Crohn’s disease affects both children and older adults, more than 80 percent of visits were among young and middle-aged adults. Visits were most common among whites, and there were similar rates for males and females. Crohn’s disease was the first-listed diagnosis at 57,000 hospital discharges and was mentioned as another diagnosis on nearly 100,000 other discharges. Rates increased modestly with age among adults and were higher for whites and females.

Age-adjusted rates of ambulatory care visits increased from 1992–1993 through 2003–2005 by 74 percent (Figure 1), continuing a trend that began at least as early as 1985, when the rate of office-based visits was 185 per 100,000 population.16 Rates of hospitalization were relatively stable from 1979 through the early 1990s, but then increased modestly. Crohn’s disease was uncommonly listed as the underlying cause of death in 2004, and more often as a contributing cause (Table 2). Rates increased with age and did not differ greatly by race or by sex. Between 1979 and 2004, mortality for Crohn’s disease as underlying cause changed little, but as underlying or other cause increased by 53 percent (Figure 2).

According to the Verispan database of prescriptions filled at retail pharmacies (Appendix 2), mesalamine was the costliest and most frequently prescribed medication for Crohn’s disease (Table 3), although not approved for this condition. Mesalamine was one of several nonspecific anti-inflammatory agents prescribed. The exception was infliximab, a monoclonal antibody for which there was a considerable cost for the modest number of prescriptions.

ULCERATIVE COLITIS

In 2004, there were about one-half million first-listed ambulatory care visits for UC and about 700,000 all-listed visits (Table 4). Visit rates were highest among young adults, and women had almost twice the rate of men. Visits were not frequent enough among other groups to provide reliable data. Hospitalizations were relatively uncommon, with 35,000 first-listed discharge diagnoses and 82,000 all-listed diagnoses.

Ambulatory care rates for UC may have increased between 1992–1993 and 2003–2005 (Figure 3), but not nearly as much as for Crohn’s disease. Hospitalization rates with a discharge diagnosis of UC were relatively stable for many years, as far back as 1970, but then increased 67 percent in just 5 years, 1999–2004.17 UC was uncommonly listed as the underlying cause of death in 2004, and more often as a contributing cause (Table 5). Mortality rates did not change between 1979 and 2004, except for a sharp drop in 1999, the year that ICD-10 was instituted for mortality coding (Figure 4).

According to the Verispan database of prescriptions filled at retail pharmacies, mesalamine and its prodrug balsalazide accounted for the majority of prescriptions and three-quarters of the prescription cost for UC (Table 6). Comparing Crohn’s disease and UC, the number of prescriptions and their costs were very similar, as were the actual drugs prescribed. The major difference was that UC was treated with fewer drugs. A significant limitation of the drug data is a lack of information on infusion biologics, which have become an important and expensive treatment for IBD.

References

Table 1. Crohn’s Disease: Number and Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With First-Listed and All-Listed Diagnoses by Age, Race, and Sex in the United States, 2004

Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (3-year average, 2003–2005), and Healthcare Cost and Utilization Project Nationwide Inpatient Sample (HCUP NIS)

Demographic Characteristics Ambulatory Care Visits First-Listed Diagnosis Number in Thousands Ambulatory Care Visits First-Listed Diagnosis Rate per 100,000 Ambulatory Care Visits All-Listed Diagnosis Number in Thousands Ambulatory Care Visits All-Listed Diagnosis Rate per 100,000 Hospital Discharges First-Listed Diagnosis Number in Thousands Hospital Discharges First-Listed Diagnosis Rate per 100,000 Hospital Discharges All-Listed Diagnosis Number in Thousands Hospital Discharges All-Listed Diagnosis Rate per 100,000
AGE (Years)
Under 15
2 3 3 5
AGE (Years)
15–44
405 322 505 401 33 26 64 51
AGE (Years)
45–64
304 430 455 644 15 21 44 63
AGE (Years)
65+
7 18 30 82
Race
White
729 299 1,050 425 46 19 117 48
Race
Black
6 15 12 34
Sex
Female
462 315 665 444 32 22 84 55
Sex
Male
385 266 512 369 24 16 57 40
Total 847 288 1,176 401 57 19 141 48

Figure 1. Crohn’s Disease: Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With All–Listed Diagnoses in the United States, 1979–2004

The rate of ambulatory care visits over time (age-adjusted to the 2000 U.S. population) is shown by 3-year periods (except for the first period which is 2 years), between 1992 and 2005 (beginning with 1992–1993 and ending with 2003–2005). Ambulatory care visits per 100,000 increased from 227 in 1992–1993 to 395 in 2003–2005. The hospitalization rate per 100,000 was 22.9 in 1979 and remained relatively stable through 1990, after which it increased modestly to 35.8 in 2004.
Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (averages 1992–1993, 1994–1996, 1997–1999, 2000–2002, 2003–2005), and National Hospital Discharge Survey (NHDS)

Table 2. Crohn’s Disease: Number and Age-Adjusted Rates of Deaths and Years of Potential Life Lost (to Age 75) by Age, Race, and Sex in the United States, 2004

Source: Vital Statistics of the United States

Demographic Characteristics Underlying Cause Number of Deaths Underlying Cause Rate per 100,000 Underlying Cause Years of Potential Life Lost in Thousands Underlying or Other Cause Number of Deaths Underlying or Other Cause Rate per 100,000
AGE (Years)
Under 15
1 0.0 0.1 2 0.0
AGE (Years)
15–44
70 0.1 2.8 137 0.1
AGE (Years)
45–64
195 0.3 3.7 473 0.7
AGE (Years)
65+
356 1.0 0.5 973 2.7
Race
White
573 0.2 6.0 1,473 0.6
Race
Black
44 0.1 0.9 102 0.3
Sex
Female
371 0.2 3.5 886 0.5
Sex
Male
251 0.2 3.6 699 0.5
Total 622 0.2 7.0 1,585 0.5

Figure 2. Crohn’s Disease: Age-Adjusted Rates of Death in the United States, 1979–2004

Between 1979 and 2004, mortality as underlying cause changed little, but as underlying or other cause increased. Underlying-cause mortality per 100,000 was 0.16 in 1979 and 0.21 in 2004. All-cause mortality per 100,000 rose from 0.34 in 1979 to 0.52 in 2004.
Source: Vital Statistics of the United States

Table 3. Crohn’s Disease: Costliest Prescriptions

Source: Verispan

DRUG Prescription (#) Prescription Retail Cost Cost
Mesalamine 701,941 37.4% $180,555,504 69.0%
Mercaptopurine 182,978 9.7 29,004,965 11.1
Azathioprine 369,377 19.7 19,433,538 7.4
Budesonide 75,949 4.0 17,236,094 6.6
Prednisone 420,924 22.4 6,931,980 2.7
Sulfasalazine 112,215 6.0 4,230,607 1.6
Infliximab 986 0.1 2,072,089 0.8
Balsalazide 5,260 0.3 1,382,994 0.5
Methylprednisolone 6,615 0.4 337,040 0.1
Olsalazine 2,123 0.1 319,852 0.1
Total 1,878,368 100.0% $261,504,663 100.0%

Table 4. Ulcerative Colitis: Number and Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With First-Listed and All-Listed Diagnoses by Age, Race, and Sex in the United States, 2004

Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (3-year average, 2003–2005), and Healthcare Cost and Utilization Project Nationwide Inpatient Sample (HCUP NIS)

Demographic Characteristics Ambulatory Care Visits First-Listed Diagnosis Number in Thousands Ambulatory Care Visits First-Listed Diagnosis Rate per 100,000 Ambulatory Care Visits All-Listed Diagnosis Number in Thousands Ambulatory Care Visits All-Listed Diagnosis Rate per 100,000 Hospital Discharges First-Listed Diagnosis Number in Thousands Hospital Discharges First-Listed Diagnosis Rate per 100,000 Hospital Discharges All-Listed Diagnosis Number in Thousands Hospital Discharges All-Listed Diagnosis Rate per 100,000
AGE (Years)
Under 15
1 2 2 3
AGE (Years)
15–44
205 163 16 13 29 23
AGE (Years)
45–64
10 14 24 34
AGE (Years)
65+
8 23 27 75
Race
White
435 173 582 230 29 12 70 28
Race
Black
3 8 6 18
Sex
Female
306 201 483 308 19 12 45 28
Sex
Male
232 162 16 11 37 27
Total 513 175 716 244 35 12 82 28

Figure 3. Ulcerative Colitis: Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With All–Listed Diagnoses in the United States, 1979–2004

The rate of ambulatory care visits over time (age-adjusted to the 2000 U.S. population) is shown by 3-year periods (except for the first period which is 2 years), between 1992 and 2005 (beginning with 1992–1993 and ending with 2003–2005). Ambulatory care visits per 100,000 increased from 231 in 1992–1993 to 241 in 2003–2005 (with a dip to 190 in 1994-1996). The hospitalization rate per 100,000 was 16.9 in 1979 and remained relatively stable for many years until 1999, but then increased to 26.5 in 2004.
Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (averages 1992–1993, 1994–1996, 1997–1999, 2000–2002, 2003–2005), and National Hospital Discharge Survey (NHDS)

Table 5. Ulcerative Colitis: Number and Age-Adjusted Rates of Deaths and Years of Potential Life Lost (to Age 75) by Age, Race, and Sex in the United States, 2004

Source: Vital Statistics of the United States

Demographic Characteristics Underlying Cause Number of Deaths Underlying Cause Rate per 100,000 Underlying Cause Years of Potential Life Lost in Thousands Underlying or Other Cause Number of Deaths Underlying or Other Cause Rate per 100,000
AGE (Years)
Under 15
2 0.0
AGE (Years)
15–44
17 0.0 0.7 65 0.1
AGE (Years)
45–64
56 0.1 1.0 166 0.2
AGE (Years)
65+
238 0.7 0.3 757 2.1
Race
White
291 0.1 1.7 930 0.4
Race
Black
18 0.1 0.3 54 0.2
Sex
Female
168 0.1 0.9 502 0.3
Sex
Male
143 0.1 1.1 488 0.4
Total 311 0.1 2.0 990 0.3

Figure 4. Ulcerative Colitis: Age-Adjusted Rates of Death in the United States, 1979–2004

Mortality rates did not change between 1979 and 2004, except for a sharp drop in 1999, the year that ICD-10 was instituted for mortality coding. Underlying-cause mortality per 100,000 was 0.22 in 1979, decreased to 0.11 in 1999, and was 0.10 in 2004. All-cause mortality per 100,000 was 0.48 in 1979, decreased to 0.36 in 1999, and was 0.33 in 2004.
Source: Vital Statistics of the United States

Table 6. Ulcerative Colitis: Costliest Prescriptions

Source: Verispan

DRUG Prescription (#) Prescription Retail Cost Cost
Mesalamine 1,080,775 49.5% $177,226,718 65.0%
Balsalazide 213,951 9.8 57,138,781 20.9
Sulfasalazine 464,152 21.3 19,986,261 7.3
Olsalazine 57,143 2.6 9,955,396 3.6
Prednisone 350,182 16.1 4,821,998 1.8
Budesonide 15,419 0.7 3,733,906 1.4
Total 2,181,622 100.0% $272,863,060 100.0%

Table 7. All Inflammatory Bowel Disease: Number and Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With First-Listed and All-Listed Diagnoses by Age, Race, and Sex in the United States, 2004

Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (3-year average, 2003–2005), and Healthcare Cost and Utilization Project Nationwide Inpatient Sample (HCUP NIS)

Demographic Characteristics Ambulatory Care Visits First-Listed Diagnosis Number in Thousands Ambulatory Care Visits First-Listed Diagnosis Rate per 100,000 Ambulatory Care Visits All-Listed Diagnosis Number in Thousands Ambulatory Care Visits All-Listed Diagnosis Rate per 100,000 Hospital Discharges First-Listed Diagnosis Number in Thousands Hospital Discharges First-Listed Diagnosis Rate per 100,000 Hospital Discharges All-Listed Diagnosis Number in Thousands Hospital Discharges All-Listed Diagnosis Rate per 100,000
AGE (Years)
Under 15
3 6 5 8
AGE (Years)
15–44
543 432 710 564 49 39 92 73
AGE (Years)
45–64
486 688 677 958 25 35 68 96
AGE (Years)
65+
446 1,227 15 41 56 155
Race
White
1,163 472 1,631 654 76 31 185 75
Race
Black
236 764 9 23 18 51
Sex
Female
768 516 1,148 752 51 34 127 82
Sex
Male
592 410 744 531 40 28 93 66
Total 1,359 463 1,892 644 92 31 221 75

Figure 5. All Inflammatory Bowel Disease: Age-Adjusted Rates of Ambulatory Care Visits and Hospital Discharges With All–Listed Diagnoses in the United States, 1979–2004

The rate of ambulatory care visits over time (age-adjusted to the 2000 U.S. population) is shown by 3-year periods (except for the first period which is 2 years), between 1992 and 2005 (beginning with 1992–1993 and ending with 2003–2005). Ambulatory care visits per 100,000 increased from 458 in 1992–1993 to 636 in 2003–2005. The hospitalization rate per 100,000 was 39.4 in 1979 and remained relatively stable through 1990, after which it increased to 61.7 in 2004.
Source: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS) (averages 1992–1993, 1994–1996, 1997–1999, 2000–2002, 2003–2005), and National Hospital Discharge Survey (NHDS)

Table 8. All Inflammatory Bowel Disease: Number and Age-Adjusted Rates of Deaths and Years of Potential Life Lost (to Age 75) by Age, Race, and Sex in the United States, 2004

Source: Vital Statistics of the United States

Demographic Characteristics Underlying Cause Number of Deaths Underlying Cause Rate per 100,000 Underlying Cause Years of Potential Life Lost in Thousands Underlying or Other Cause Number of Deaths Underlying or Other Cause Rate per 100,000
AGE (Years)
Under 15
1 0.0 0.1 4 0.0
AGE (Years)
15–44
87 0.1 3.5 202 0.2
AGE (Years)
45–64
251 0.4 4.8 636 0.9
AGE (Years)
65+
594 1.6 0.7 1,729 4.8
Race
White
864 0.3 7.7 2,399 0.9
Race
Black
62 0.2 1.1 156 0.5
Sex
Female
539 0.3 4.3 1,386 0.8
Sex
Male
394 0.3 4.7 1,185 0.9
Total 933 0.3 9.1 2,571 0.9

Figure 6. All Inflammatory Bowel Disease: Age-Adjusted Rates of Death in the United States, 1979–2004

Mortality remained stable between 1979 and 2004. Underlying-cause mortality per 100,000 was 0.38 in 1979 and 0.31 in 2004. All-cause mortality per 100,000 was 0.82 in 1979 and 0.85 in 2004.
Source: Vital Statistics of the United States
Last Reviewed January 2008