The Ostomy Files: Ostomy Statistics: The $64,000 Question

   This we know: The Queen "Mum" had one - as did Senator Hubert Humphrey, Speaker of the House Thomas "Tip" O'Neill, and actress Loretta Young.

Contemporary notables include Rolf Benirschke, Pope John Paul II, actress Barbara Barrie, President George W. Bush's brother Marvin, and professional golfer Al Geiberger. Yet after more than 50 years and despite the bravery of these previously-mentioned well-known people, the demographics of the American ostomy population and the number and types of new surgeries performed each year remain elusive.

   A possible explanation of this dilemma may be due, in part, to the reporting and coding mechanisms our country uses to track medical procedures. What specific codes most providers use to bill for ostomy-related conditions and procedures is unclear, because many codes could be applicable. For example, the International Classification of Diseases (ICD-9-CM) coding system codes 153-154 and 197.5 are applicable for malignant neoplasm of large intestine and rectum. ICD-9-CM codes 520 through 579 are listed for diseases of digestive system and 580-629 for disease of genitourinary system. Several DRGs could be used to bill for services provided to inpatients admitted for treatment of ostomy-related complications or new surgeries. Tracking these data is difficult because the coding systems are not always disease specific and do not indicate whether a surgery is temporary or permanent or if the submission is for a patient previously reported by the same or another provider. More recent electronic tracking mechanisms and proposed changes to coding systems are helping make these data a bit clearer.

Number of Patients

   Currently available estimates of the number of patients vary. One report estimates that 450,000 people in our country currently have a stoma and that 120,000 new surgeries are performed each year.¹ The United Ostomy Association estimates that slightly more than 500,000 Americans now have some type of stoma. Another market research report² stated there were 800,000 ostomy patients in the US in 2000, and that the number would grow at an annual rate of 3%.

Age

   In 1998, two studies^3,4 attempted to clarify the average age of someone with a stoma, as well as how the population was segmented by surgery type. The studies revealed the average age of a person with a colostomy to be 70.6 years, an ileostomy 67.8 years, and a urostomy 66.6 years. Using these numbers, the average age of an American with an ostomy is about 68.3 years; he or she is, therefore, a Medicare beneficiary.

Surgery Type

   These same studies revealed an equal distribution between the three major types of ostomy surgeries: colostomy 36.1%, ileostomy 32.2%, and urostomy 31.7%. This was an interesting finding because it has long been assumed that ileostomy and colostomy surgeries outnumbered urinary stomas. Other types of sphincter-saving surgeries were not included in these surveys.

Gender

   No definitive gender data are currently available for the ostomy population. However, if the average age of the person with an ostomy is 68.3 years and the average life expectancy of American women is higher than that of men, it could be presumed that more women than men have an ostomy. In fact, a 1998 consumer survey of more than 1,400 people with an ostomy showed that 57% were female.⁵ This correlates with data from the Centers for Medicare and Medicaid Services that the prototypical Medicare resident in either home care or a nursing home is female. Additionally, the American Cancer Society⁶ estimates that approximately 147,500 new cases of colorectal cancer will be diagnosed this year, affecting women slightly more than men (74,700 versus 72,800). However, after the age of 50, the incidence for men seems to increase slightly.

Where are the Patients?

   The 1999 National Home and Hospice Survey⁷ of care provided in 1996 reported that one-third of 2.4 million (792,000) current home health patients and one-fourth of 7.8 million (1,950,000) discharged home health patients had urinary incontinence, a urinary catheter, an ileostomy, or a colostomy. Two-thirds of all home care patients were women. Of the 59,000 current and 393,000 discharged hospice patients, 60% of current (35,400) and 80% of discharged patients (314,400) had incontinence, a urinary catheter, an ileostomy, or a colostomy. While these data are promising in the quest to define the situation, they remain nebulous.

The Challenge Remains

   This aspect of ostomy care and management deserves an investment of research dollars. More targeted and reliable statistics about this population could be powerful tools to leveraging public and private insurance policies, justifying costs of care, and evaluating the quality of life of an American living with an ostomy in the 21st century.

   The Ostomy Files is made possible through the support of ConvaTec, A Bristol-Myers Squibb Company, Princeton, NJ.