…they vary in quality due to differences in their training, experience and services. These differences in quality become greater and matter more when you need sophisticated medical care for a complex medical condition.
A surgeon who performs a complex procedure often, for example, has better success with it than a surgeon who does the same procedure only occasionally. The complication rate and the death rate for the same procedure may be many times higher at one hospital than another.
Clearly the doctor and hospital that you choose have a direct impact on how well you do - especially when you need treatment for Crohn's disease or ulcerative colitis. These two inflammatory bowel diseases (IBD) affect more than 2 million Americans. An estimated 200,000 children under the age of 16 have IBD.
Although there is currently no medical cure for these diseases, people with IBD can now enjoy more normal lives thanks to innovative treatments available at some medical centers.
However, this is a complex disease that is not easily diagnosed or readily controlled by medications. It may require many operations, each more difficult than the last because of adhesions and obstructions that are caused by scar tissue from the earlier operation. Successful treatment, therefore, requires a medical team with expertise in treating the most difficult cases, and one that has experience with the full range of medical and surgical treatment options available.
Choosing a doctor and a hospital for your treatment is one of the most important decisions of your life. No one has more at stake than you.
But comparisons like those we talk about making are not possible in an emergency. If you make these comparisons early, you will be prepared if and when the need for treatment arises.
Most of us do more research when we buy a car or a television set than when we choose a doctor and a hospital. That may be because we don't know what questions to ask or what to base our evaluation on. There is no consumer magazine that rates doctors and hospitals the way Consumer Reports rates air conditioners.
There are many different ways to measure quality care, and there is no universal agreement on which should be used. However, at The Cleveland Clinic Foundation, we believe that you can use the following six points, or quality indicators, to compare health care providers:
- Credentials
- Experience
- Range of services
- Participatio- i- research and education
- Patient satisfaction
- Outcome
Choosing a doctor or hospital is often influenced by values. You may want to go to a hospital that is close to home. You may want a hospital with a specific religious affiliation. But when you need specialized medical care for inflammatory bowel disease, it is essential that you also include in your decision a doctor's qualifications and a hospital's track record. These quality indicators will help you with that kind of evaluation should you require treatment for IBD.
This guide helps you choose a doctor and hospital by:
- explaining ulcerative colitis and Crohn's disease
- describing the testing involved in the diagnosis of IBD
- discussing medical treatments that need to be individualized to the patient's needs
- describing surgical options, which may include innovations such as: pelvic pouch surgery, which allows for nearly normal bowel movements continent ileostomy, which allows people with ulcerative colitis who have old-style ileostomies to have the external pouch converted to an internal pouch strictureplasty, an option for some patients with Crohn's disease, which relieves obstruction but preserves the intestine
- explaining six points that indicate quality; and
- providing questions and answers from the Cleveland Clinic that you can use to compare doctors and hospitals.
Inflammatory bowel disease - ulcerative colitis and Crohn's disease - refers to serious, chronic disorders of the intestinal tract that occur in both adults and children. Although these diseases share some similarities, there are important differences.
Ulcerative colitis involves only the large intestine (bowel or colon) and the rectum, never the small intestine. It affects only the bowel lining.
Crohn's disease could involve all parts of the digestive tract, including the small intestine (ileum), large intestine, rectum and anus. It causes deep, penetrating ulcers that affect all layers of the bowel wall.
A variety of diagnostic procedures and laboratory tests are used to diagnose IBD; however, pathologic and endoscopic examination are particularly important to diagnosing these diseases.
Endoscopy. This is the general term for procedures that look inside the gastrointestinal tract. During endoscopy, tiny tissue samples may be taken for biopsy. Several types of endoscopy are listed below:
- Proctosigmoidoscopy examines the rectum and the sigmoid and distal sections of the colon.
- Colonoscopy examines the entire colon to determine the extent of disease and to distinguish between ulcerative colitis and Crohn's disease.
- Upper gastrointestinal endoscopy examines the upper digestive tract and may be used to look for any signs of active Crohn's disease in the esophagus, stomach or duodenum (proximal small intestine).
Pathology. Because ulcerative colitis and Crohn's disease produce similar symptoms and because other conditions can mimic IBD, pathology has become an important diagnostic tool. By examining bowel tissue, cells and fluid specimens under the microscope, a pathologist who specializes in gastrointestinal pathology provides vital input for treatment decisions and is a valuable member of the treatment team.
If you or a family member is diagnosed as having IBD, both medical and surgical treatment options should be explained. The goal of treatment is to reduce symptoms and enable the intestines to absorb adequate nutrients.
Medications. While there is no medical cure for IBD, several medications - including sulfa drugs, corticosteroids, immunosuppressive agents and antibiotics - are used to reduce inflammation of the bowel tissue, permitting healing of the bowel and relief of symptoms. As inflammation subsides and symptoms resolve, a person with IBD may enter a period of remission that can last from weeks to years. Promising new drugs are often being evaluated in clinical trials conducted at certain medical centers.
Nutrition. Many patients with IBD need specialized nutritional care. Without it, some risk becoming malnourished because they may be unable to absorb sufficient nutrients from their food. Total parenteral nutrition or hyperalimentation, which supply nutrients intravenously, can ensure that a person receives adequate nutrition. And giving the bowel a rest may alleviate some symptoms of IBD.
Surgery. When medical treatment does not control the disease, or when the side effects of steroids or other drugs threaten a person's health, surgery may be the treatment of choice.
Surgery for Crohn's disease offers temporary relief; it is not a permanent cure because the disease is likely to recur. Narrowed areas called strictures cause special problems in Crohn's disease, especially when they occur in the small intestine, because they can lead to partial or complete blockages in the bowel. For ulcerative colitis, surgery to remove the entire large intestine (colon), called a colectomy, or both the colon and rectum, called a proctocolectomy, is a permanent cure.
- Resection. With this traditional procedure for Crohn's, the diseased bowel segment is removed. But some people have several strictures during their lifetime or many strictures at one time. This may lead to a condition called short-bowel syndrome, in which not enough bowel is left to absorb adequate nutrients from food.
- Strictureplasty. In a relatively new procedure to treat Crohn's called strictureplasty, the surgeon cuts and stitches the narrowed area in a way that widens it without removing any of the bowel. Reserved for people with extensive Crohn's disease, it avoids short-bowel syndrome.
- Permanent ileostomy. This procedure for ulcerative colitis involves removing the entire large intestine, rectum and anus. An opening, called a stoma, is made in the abdominal wall. The tip of the lower small intestine (ileum) is then brought through. Stools pass through this opening and collect in an external pouch, which is attached to the stoma and must be worn at all times. This procedure is also sometimes used to treat people with Crohn's disease.
- Pelvic pouch, or ileal pouch anal anastomosis (IPAA). This newer operation avoids the stoma and the external pouch. The colon and rectum are removed. The small intestine is used to form an internal pouch or reservoir that will serve as a new rectum. This pouch is stitched to the anus, allowing for nearly normal bowel movements. Depending on the shape, the reservoir is called a J-, S-, or W-pouch. This procedure is frequently done in two operations and requires a temporary ileostomy in between. People with Crohn's disease don't qualify for the IPAA or the continent ileostomy (described below) because the disease is likely to recur.
- Continent ileostomy (Kock Pouch). This is an option for people who would like their old-style ileostomy converted to an internal pouch and for people who don't qualify for the new IPAA procedures because their anal sphincter muscles are weak. In this procedure, there is a stoma but no bag. The colon and rectum are removed. An internal reservoir is created from the small intestine. An opening is made in the abdominal wall, and the internal reservoir is then joined to the skin with a nipple valve. The patient inserts a catheter through the valve into the internal reservoir to drain the pouch.
- Laparoscopy. These procedures are being further refined through the use, in appropriate cases, of keyhole, or laparoscopic, surgery. This technique, which uses a tiny (one-quarter-inch long) incision in the abdomen, reduces pain, speeds recovery and improves the cosmetic result of surgery.
IBD Symptoms
The most common symptoms of IBD are diarrhea, which is sometimes but not always severe and bloody, and abdominal discomfort or pain.
Ulcerative colitis usually causes bleeding from the bowel and rectum. The urgent need to have frequent bowel movements can interfere with sleep and interrupt all activities.
Crohn's disease also may cause rectal bleeding, but less often than ulcerative colitis. Skin rashes, joint pain, hemorrhoids and fissures around the anal area that do not heal are complications of Crohn's disease.
In either disease, inflammation, fever and bleeding may be serious and persistent, and associated with weight loss and anemia.
In children, symptoms may be very subtle and include weight loss, anemia and recurrent fevers. Children may also suffer from stunted growth and delayed development.
People with ulcerative colitis face an increased risk of developing colon cancer, especially if the entire colon is involved and the disease exists for many years. It's important, therefore, to look for early signs that cancer may be developing. These precancerous changes, called dysplasia, may occur in the cells lining the colon.
People with ulcerative colitis which affects the entire colon should schedule periodic surveillance exams so that random biopsies can be taken. If the pathologist sees signs of dysplasia when looking at the specimens under the microscope, it signals an increased risk of developing cancer.
Measuring quality in ways that are useful to consumers is a new idea in health care. Because of that, it may not be possible to get complete information for each of these quality indicators. But when providers are willing to give you as much information as possible, it's a good sign. It shows that they are dedicated to maintaining and improving their quality, responsive to patients, and confident of their capability.
If you are told that you have inflammatory bowel disease, ask your doctor about seeing a gastroenterologist who specializes in IBD. If you are told you may need surgery, ask to see a colorectal surgeon who has experience with the full range of operations used to treat these diseases.
Get the names of several doctors and hospitals that offer the newest, most effective treatments as well as clinical trials that compare the latest drugs with experimental drugs which may provide even better results. Look for centers where research is being conducted.
Ask the questions that we suggest on the following pages. Make comparisons. Then make your decision. Be an informed consumer for yourself and your family.
How to Use Quality Indicators
How can you use these indicators to judge if one doctor or hospital is better for you than another? By combining information from more than one quality indicator, according to a report "The Quality of Medical Care: Information for Consumers" produced by the U.S. Congress, Office of Technology Assessment.
According to the report, patients about to have surgery can be confident if the hospital performs a high number of surgeries, if it has a low mortality (death) rate, and if the surgeon has extensive training and experience in the procedure.
On the other hand, the report states: "...if a hospital had a high mortality rate and a low volume of procedures, the patient might wish to question the surgeon about that hospital and about alternatives, even if other hospitals required longer travel."
Do the doctor and hospital measure up?
Credentials have been set by nationally recognized medical professional organizations to verify that doctors and hospitals meet certain standards in the delivery of health care.
Board certification, or the international equivalent, is a sign that doctors are highly trained in their field. Doctors who specialize, such as gastroenterologists and colorectal surgeons, should be board certified in the specialty in which they are practicing. Each specialty has a national board that is responsible for setting standards doctors must meet in order to be certified. Doctors who are board certified in their specialty have completed the amount of training that the specialty board requires, have practiced for a specified number of years in that specialty, and have passed a difficult examination in their specialty area. Some excellent doctors are not board certified. Board certification, however, is generally a good indication of competence and experience.
The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) is the nationwide authority that surveys hospitals. The JCAHO decides whether a hospital gets, keeps or loses accreditation based on its meeting certain criteria for staffing, equipment and facility safety requirements. Although accreditation is voluntary, most hospitals go through the process. If the hospital that you are considering is not accredited, it is important to know why.
Hospitals that do measure up are often in the public spotlight for their medical advances and the quality of their care. Information about a hospital's reputation is available through the mass media, books such as The Best Hospitals in America, the government and consumer groups.
For information about a hospital's status, call the Joint Commission on Accreditation of Healthcare Organizations at 708/916-5800.
Is the gastroenterologist board certified in gastroenterology?
All Cleveland Clinic gastroenterologists are certified in gastroenterology. Four of our pediatric gastroenterologists are board certified in pediatrics and 3 are also board certified in pediatric gastroenterology and nutrition.
Board certification became a requirement at the Clinic in 1989 for doctors being appointed to the medical staff.
Is the surgeon board certified in colorectal surgery?
Four of 6 Cleveland Clinic colorectal surgeons are board certified in colorectal surgery by the American Board of Colorectal Surgery. Two have the international equivalent.
Our pediatric surgeon is board certified in pediatrics and pediatric surgery and specializes in children's digestive diseases.
The Cleveland Clinic's surgical pathologists are board certified by The American Board of Pathology and have specialty training, as well as many years of experience, in gastrointestinal pathology. There is no board certification currently in gastrointestinal pathology.
Yes.
Has the hospital been positively and consistently recognized for medical excellence and leadership?
Yes. The Cleveland Clinic is often named among the top medical centers in the country. The April 1993 issue of American Health named the Clinic among the top medical centers in the country and cited its expertise in gastroenterology. Centers were chosen on factors such as the quality of staff and expertise in diagnosis and treatment.
The chairman of the Department of Colorectal Surgery is one of 39 Cleveland Clinic physicians listed in the 1992 edition of The Best Doctors in America.
The Cleveland Clinic has been singled out for excellence in "The Best in Medicine: Where to Get the Finest Health Care For You and Your Family" (Crown, 1990).
One of America's Best
For the past three years, (1990, 1991 and 1992), U.S. News & World Report has recognized the Cleveland Clinic as one of the best gastroenterology centers in America, based on the responses of 400 medical specialists. Those same issues of U.S. News have named the Clinic one of "America's Best Hospitals."
In the case of complex, specialized medical and surgical care for inflammatory bowel disease, the more experience the doctor and hospital have with the necessary procedures, the better the results usually will be.
It may be important to ask whether the doctor performs all procedures at one hospital or several. If the doctor performs procedures at more than one hospital, this increases the volume but means the doctor is working with different teams. The teams, therefore, don't have as much experience working together as they would if the doctor were working with the same team at the same hospital all the time.
Experience in IBD surgery is important because the problems can be so complex. There may be abscesses or adhesions, and the surgeon doesn't always know the condition of the bowel until the time of surgery. It could require a simple operation that takes only an hour, or it could result in a complicated five-hour procedure. Experience with complex cases means the surgeon will be prepared for difficult problems.
How many people with IBD are treated at the hospital each year?
Approximately 1,500 people with IBD, many with complicated cases, are treated each year at the Clinic; this includes approximately 400 children. This is one of the largest experiences for a single institution in the world.
How many endoscopies are performed?
Clinic gastroenterologists do some 15,000 gastrointestinal procedures, including 8,500 endoscopies, each year. Since 1972, they've done more than 100,000 endoscopies.
How long has the hospital had a department specializing in colorectal surgery?
The Department of Colorectal Surgery was formed in 1954.
How many strictureplasties are done each year?
Clinic surgeons have done strictureplasty procedures for more than 180 patients from 1984 to 1992. Because an average of 4 strictures are treated in each operation, they have done more than 700 strictureplasties. The Clinic has the world's largest experience with this procedure.
How many IPAA procedures are performed?
The Cleveland Clinic began offering the IPAA procedures in 1983, performing 15 that year. Now Clinic colorectal surgeons perform 150 to 160 of these procedures a year. They have the second largest experience in the world, with more than 880 patients treated through 1992.
How many resections are performed?
Approximately 120 are done each year at the Clinic.
How many laparoscopies are performed?
The Clinic has done 80 procedures using this newer technique in the past two years.
Were all the procedures performed by the doctor at one hospital or at several?
All our physicians perform all procedures exclusively at the Cleveland Clinic.
Sidebar
A fistula occurs when the inflamed intestine adheres to the neighboring bowel or another structure such as the bladder, anus, vagina or skin. These abnormal channels, or fistulas, between the two structures carry body wastes from the intestine to that nearby organ or outside to the skin. Fistulas are more common in Crohn's disease.
What services are available?
Hospitals with a broad range of services can treat more complex medical conditions and better handle complications that may occur. If complications arise, you want the best medical care available, and you want it immediately.
Range of specialty departments:
Medical problems such as inflammatory bowel disease do not exist in isolation. Therefore, immediate access to a full range of specialty departments within a facility is critical.
Complications may occur that affect other parts of the body. These include anemia, arthritis, skin problems such as fistulas and fissures, inflammation in the eyes or mouth, liver disease, and bone loss caused by steroid treatment.
Complications such as infections and inflammations may occur following surgery. Before surgery, some people may be seriously malnourished and require sophisticated nutrition replenishment.
The many operations some people with IBD undergo may make surgery for an unrelated problem more difficult due to adhesions that have formed.
Range of diagnostic and treatment options:
The diagnosis and treatment of IBD involve health care professionals from many disciplines working as a team: pathologists, gastroenterologists, colorectal surgeons, enterostomal therapists, nutritionists and pharmacists.
People with IBD may be treated medically at first and later require surgery. Many different surgical techniques are available to fit the complex needs of individuals with IBD.
For these reasons, it is important to choose a facility that can diagnose and treat IBD in a variety of ways. That way you will get the most effective, appropriate and cost-effective treatment available.
Is help available from a full range of specialty departments?
The Cleveland Clinic's 500 physicians - all on staff full time - provide care in 100 specialties and subspecialties including pediatrics, pathology, dermatology, nutrition, arthritis and liver treatment. Because all of these specialists are represented in one facility along with a Children's Hospital, prompt consultation, diagnosis and treatment are available.
Does the hospital offer a variety of options for diagnosing and treating IBD?
The Clinic offers a full range of options, which include:
standard and video endoscopy
gastrointestinal pathology
barium X-ray studies
upper GI and small bowel follow-through examination
ultrasonography and endoscopic ultrasonography
tissue sampling and biopsy
anorectal physiology testing
blood and urine tests and stool examinations
ileostomy
ileal pouch anal anastomosis procedures,
including the S-, J- and W-pouches
strictureplasty
stricture revision
continent ileostomy surgery (Kock pouch)
laparoscopic bowel surgery
Does the hospital provide comprehensive support services to IBD patients?
The Cleveland Clinic offers a complete range of support services, which include the following:
- Enterostomal therapy to help patients deal with the equipment and techniques needed to take care of stomas, fistulas and skin ulcers.
- Nutritional services, including a home parenteral nutrition program.
Sidebar
Sophisticated Nutritional Support
The Cleveland Clinic has one of the longest-running and largest nutritional support programs in the country for people with IBD who are severely malnourished. Its computer-based total parenteral nutrition (TPN) program ensures optimal nutrition.
- Two physicians with specialized training in nutrition head the Nutrition Support Team.
- Dietitians specially trained and certified by the National Board of Nutrition Support assess the nutritional status of patients with one of the country's most sophisticated combinations of metabolic tools.
- Nurses certified by the National Board of Nutrition Support teach patients how to prevent infection due to their intravenous line and ensure continuity of care for the patient at home by being available to answer questions.
- The pharmacist, who is certified by the Board of Pharmaceutical Specialties, ensures that each patient receives the correct, complex mixture of solutions.
- The Clinic's in-house laboratories have sophisticated equipment to analyze blood for lack of various minerals.
What type of hospital is it?
There are many advantages to selecting a hospital that combines patient care with research and education.
Ideally, the individuals engaged in patient care, research and teaching are organized around a given disease or class of patients, facilitating the sharing of knowledge, research and clinical findings. This approach results in the most rapid transfer of basic scientific knowledge from the laboratory to care delivered at the patient's bedside.
Those individuals on the staff of such hospitals are exposed to an important interchange of ideas. They also are exposed to the newest treatments and forms of technology. At teaching hospitals, physicians are available 24 hours a day.
There may be other advantages to choosing a teaching hospital. Private, not-for-profit teaching hospitals had lower mortality rates than other types of hospitals, a study in the December 1989 issue of the New England Journal of Medicine suggested.
Sidebar
Private, not-for-profit teaching hospitals had lower mortality rates than other types of hospitals…
Is the hospital associated with a teaching program?
Yes. Incorporated in 1935, The Cleveland Clinic Educational Foundation sponsors one of the nation's largest physician postgraduate training programs.
Does the hospital conduct research or clinical trails related to inflammatory bowel disease?
- Cleveland Clinic researchers are trying to understand what causes the intestine's immune system to trigger IBD. With new methods, developed to isolate inflammatory cells from the gastrointestinal system, scientists can now study the role of lymphokines in IBD. Lymphokines are responsible for provoking an immune response, and investigators are trying to determine how lymphokines cause IBD symptoms to occur.
- Cleveland Clinic researchers are participating in cutting-edge research using natural substances that the body makes to fight the inflammation that causes IBD. These natural substances, made by recombinant DNA technology, block the specific cells that cause IBD without using chemicals. Because these recombinant products target the specific cells that cause the disease, they may be much more effective than drugs that act on a broad spectrum of cells. These recombinant DNA products, which mimic the body's natural defenses, are also likely to be much less toxic and result in fewer side effects.
- In addition to laboratory research, the Cleveland Clinic is participating in multiple trials to test the effectiveness of promising new drugs.
Does the hospital have fully accredited residency training programs in gastroenterology and colorectal surgery?
The Accreditation Council on Graduate Medical Education has accredited the Cleveland Clinic's residency training programs in gastroenterology and colorectal surgery, which help teach innovative procedures to doctors in training.
Is everybody happy?
If you ask one person about his or her experience with a doctor or a hospital, you get one person's point of view. Patient satisfaction surveys allow you to judge quality based on the experience of many previous patients. This provides you with a more objective measurement.
Most hospitals routinely use surveys to learn if patients are satisfied with their medical experience. They can use these results to improve their services.
Patient satisfaction often reflects the personal side of care. Surveys ask questions such as, How willing are the doctors and nurses to listen? Do they answer questions and explain treatments? How much time does the doctor spend with the patient? Is the hospital clean? Is the food good?
Patient satisfaction information can predict what your experience in a particular hospital is likely to be.
How satisfied are hospitalized patients with their experience at this facility?
93% of patients who were hospitalized at the Cleveland Clinic for a digestive disorder such as inflammatory bowel disease said they were either very satisfied or satisfied with their hospital care.
90% said they would return.
How satisfied are outpatients with their experience at this facility?
97% of patients with a digestive disorder such as inflammatory bowel disease who came to the Cleveland Clinic for outpatient services said they were either very satisfied or satisfied with their experience.
95% said they definitely would return or probably would return.
Is there a program to help patients and their families with difficulties that may arise during a hospital stay?
Cleveland Clinic patients may call an ombudsman - another name for patient-relations representative - if they have concerns about their care.
Patients in the Cleveland Clinic hospital may dial a 24-hour Help line from their room if they have any problems, questions, suggestions or concerns related to service.
What are the risks?
Many outcome indicators can be used to measure the success of, and risks associated with, treatment. The indicators used depend on the treatment or procedure. For procedures used to treat life-threatening conditions, the mortality (or death) rate associated with a procedure is often the most important measure of your risk and a sensitive measure of quality. If you have a chronic illness such as IBD, however, the issues are different.
Complications are a measure of quality. People undergoing surgery for Crohn's or ulcerative colitis are at an increased risk for developing complications. And complications in certain types of patients may be inevitable. Even in those circumstances, the experienced surgeon may be able to minimize those risks by practicing "defensive" surgery, which means operating quickly, minimizing blood loss and using an aseptic technique to reduce the risk of contamination.
Therefore, a hospital's complication rate is an appropriate measure of quality for IBD treatment. Complications that could develop include fistulas and abscesses, new strictures, infections, inflammation and bowel obstruction. The ultimate complication with the pouch procedure (IPAA) is sepsis. When this happens, the infected pouch must be removed and a permanent ileostomy with an external bag must be put in its place. This complication almost never occurs in the hands of an experienced surgeon.
Quality of life is important. The major goal of therapy for patients with IBD is to decrease or alleviate symptoms and complications, stop the disease's progression, and maintain a close-to-normal daily life.
A good quality of life generally means a person can function at home and at work, has a good attitude toward life and health, has good relationships, and feels good about his or her body.
Quality of life would be considered better after surgery for people with Crohn's disease if they could stop steroid treatment, have no more bowel obstructions, and have peace of mind that a major bowel resection, which could have led to short-bowel syndrome, had been avoided.
Quality of life after surgery for ulcerative colitis is improved by a pouch that functions well and frees people of urgency, allowing them to wait for an hour or so from the time they first feel the need to move their bowels.
However, quality of life is difficult to define; and it's only recently that efforts have been made to measure it. But it is important to discuss it with your doctor and to understand how the quality of your life may be improved by surgery.
Therefore, if you're considering surgery for Crohn's or ulcerative colitis, ask for the complication rate. Ask about the quality of life you can expect after surgery.
Try to compare complication rates for patients most like yourself because this affects outcome. People, for example, whose Crohn's disease is less advanced experience few complications, while patients whose disease is more advanced are more likely to develop fistulas, bleeding, abscesses and new strictures. It's important to try to compare apples with apples so that you know what your risks really are. If a doctor or hospital can't give you these rates or is reluctant to give information, look at alternatives.
We are providing our rates on the following two pages for the most common complications. Where available, we've included rates from studies of other medical centers.
Because so many different types of surgical options are available to treat Crohn's and ulcerative colitis, we've chosen three for comparison. For Crohn's disease, we're giving our data for resections and strictureplasty. For ulcerative colitis, we're providing data on the ileal pouch anal anastomois (IPAA) because it is by far the most frequently performed of all the options. It also has the highest risk of complications.
Strictureplasty
How many patients developed fistulas or abscesses (infection) after strictureplasty?*
In the Cleveland Clinic series, 7 patients out of 116 (6%) studied developed these complications. However, only 2% required a reoperation.
In the eight other centers studied, 9 patients out of 107 (8%) developed these complications.
In how many patients did strictures recur at the site of the strictureplasty?*
In the Cleveland Clinic series, only 2.8% of the 116 patients experienced symptomatic restricturing of the strictureplasty site. Almost all were able to stop or reduce their steroid medication, and 99% got relief of their bowel obstruction.
In the eight other centers studied, approximately 4% experienced this restricturing. We say approximately because the restricture rate wasn't always specified in the studies we reviewed.
What was the mortality rate associated with strictureplasty?*
The Cleveland Clinic's mortality rate was 0%; the mortality rate at the other centers was also 0%.
Resections
How many people who had resections had recurrence of Crohn's disease, requiring another operation?
Of 320 Cleveland Clinic patients who were studied for more than 10 years, 158 (49.4%) had recurrence, requiring another operation, as reported in the June 1985 issue of Gastroenterology.
In another Cleveland Clinic study of 361 patients reported in the June 1981 issue of the New England Journal of Medicine, there was an annual recurrence rate of 3.9%, a cumulative risk of recurrence of 31.2% at eight years, and a 41.8% cumulative risk at 15 years.
What was the hospital's operative mortality rate associated with resections?
In a recent prospective study of 160 Cleveland Clinic patients, there was no operative mortality.
Ileal Pouch
Anal Anastomosis
How many patients developed infections following the ileal pouch anal anastomosis (IPAA)?**
Of the 94 Cleveland Clinic patients who were studied for 10 months, none had wound infection; 2 (2.2%) developed pelvic abscesses soon after the operation.
How many developed pouchitis?**
Of the 94 patients, 12 (13%) developed pouchitis (inflammation of the pouch) and required treatment with antibiotics.
How many had small bowel obstruction?**
Of the 94 patients, a total of 15 (16%) developed small bowel obstruction but only 4 had to have reoperations.
How long was it necessary for patients undergoing this type of procedure to stay in the hospital?**
The mean Cleveland Clinic hospital length of stay was 9 days for these patients. It has recently dropped further to 6 or 6 1/2 days.
What was their overall functional outcome?**
85% had excellent function; 8.5% had good function; 3.2% had fair outcome; and 3.3% had poor function.
What is the mortality rate associated with IPAA procedures?
At the Cleveland Clinic, the mortality rate has been 0% for patients undergoing these pouch procedures in the past three years. Of all 880 patients who've had the procedure here through the end of 1992, the rate is 0.2% (2 of 880 patients).
* This data is based on studying 116 Cleveland Clinic patients between 1984 and 1991 along with a Cleveland Clinic review of cumulative published data of eight other institutions from around the world.
** This information is based on studying 94 Cleveland Clinic patients who had IPAA using the double-stapled technique.
Pioneering Work in Inflammatory Bowel Disease
The Cleveland Clinic Foundation is recognized worldwide for its comprehensive commitment to understanding, controlling and treating inflammatory bowel disease. Doctors and scientists here have been leaders in the field of IBD for more than 50 years and have been responsible for a number of major advances.
- Pioneering work in the development of a new procedure called strictureplasty, in which the surgeon widens any blocked or narrowed segments, leaving the bowel intact. Cleveland Clinic colorectal surgeons have the world's largest experience with strictureplasty.
- Establishment of the largest experience in the world with a stapling technique which, because it preserves sphincter muscle function, has produced major functional improvements in people having pelvic pouch procedures.
- Reporting of the first U.S. clinical trials of video endoscopy after testing the efficacy of a prototype in 100 patients during 1982. The Cleveland Clinic also was the first U.S. medical center to test an image-enhancement software system that enables physicians to magnify, sharpen and manipulate images to provide a much more precise picture of gastrointestinal abnormalities.
- Compilation of one of the world's first registries for inflammatory bowel disease with a computerized system to study and evaluate the causes, treatment, family incidence and long-term prognosis of these diseases.
- Development of the concept of enterostomal therapy in the 1950s. The first training program was introduced here for enterostomal therapists who help colostomy and ileostomy patients deal emotionally and physically with their condition.
- Refinement of manometry, a technique to measure muscle function of the esophagus, rectum or bile ducts through electronic signals.
- Development in the 1940s of the "Tom Jones closure" of abdominal incisions, which uses a one-layer stainless steel wire closure of the peritoneum, rectus muscle and facia.
- Extensive research to develop new medical therapies for IBD and determine appropriate dosages of existing therapies to reduce medication side effects.
- Development of the no-touch isolation technique for colon cancer, which was responsible for a revolutionary reduction in mortality rates for colon surgery.
- Cleveland Clinic colorectal surgeons are testing a one-stage pelvic pouch procedure for ulcerative colitis surgery candidates.
- The Cleveland Clinic was one of the first to apply the laparoscopic technique for creating of an ileostomy or colostomy and is investigating its use in the treatment of Crohn's disease.
Sidebars
IBD Resources
If you would like more literature or would like to join a local chapter and support group, call or write either the local or national office of the Crohn's and Colitis Foundation:
Crohn's and Colitis Foundation of America, Inc.
23366 Commerce Park Road
Cleveland, Ohio 44122
216/831-2692
Crohn's and Colitis Foundation of America, Inc.
444 Park Avenue South
New York, N.Y. 10016-7374
800/343-3637
For Information
If you need more information or want to make an appointment with a Cleveland Clinic IBD specialist, please call one of the numbers below:
216/444-8919
(in Cleveland)
800/545-7718
(toll-free outside Cleveland)
Cleveland Clinic Florida
Through these activities, the Cleveland Clinic has built and maintained an international reputation for excellence and innovation in the diagnosis and treatment of inflammatory bowel disease. Its affiliated Cleveland Clinic Florida has drawn upon this experience and expertise to establish corresponding innovative treatments to help people with Crohn's disease and ulcerative colitis enjoy more normal lives.
For more information or to make an appointment at Cleveland Clinic Florida, call 800/359-5101.
Reprinted with permission by: Med Help International