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 condition.
A surgeon, for example, who performs a complex procedure often, has better results with it than a surgeon who does the same procedure only occasionally. The complication rate, death rate and effectiveness of 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 a condition as serious as kidney disease. Kidney disease affects more than 20 million Americans, yet it's one of the least talked about diseases. Kidney and urologic diseases combined are an associated cause of one in every eight deaths nationwide and account for more than six percent of all surgeries performed. Although these are sobering statistics, you can be comforted by the fact that modern technology has developed many techniques to help you get well.
But this means making some difficult and critical decisions such as choosing a doctor and hospital for your treatment. No one has more at stake than you; it's one of the most important decisions of your life. This brochure deals with kidney diseases that may require surgery such as kidney stones, end-stage renal disease (permanent kidney failure), renal (kidney) artery disease, kidney disease in children, and kidney cancer. You may be reading this brochure because you have been told you have a high risk of developing one of these diseases, because you or your doctor suspect you may have developed a kidney problem, or because you or your child have been diagnosed with a problem and are considering treatment. The comparisons we talk about making are not possible in an emergency; they must be made early, so that you will be prepared should the need for treatment arise.
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 are few consumer magazines that rate 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:
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 kidney 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 kidney disease.
A Step-by-Step Guide
This guide helps you choose a doctor and hospital by:
-explaining four kidney diseases that may require surgery kidney stones, end-stage renal disease, renal artery disease and kidney cancer;
-describing forms of treatment for each;
-explaining six points that indicate quality; and
-providing questions and answers from The Cleveland Clinic Foundation that you can use to compare doctors and hospitals.
Kidney stones occur when chemicals in the urine become concentrated to the point that they form solid crystals and, eventually, result in stones. Most stones pass by themselves, but some become lodged in the urinary tract, causing excruciating pain, blockage or infection. Most kidney stones depending on their size and location can be removed with a technique called extracorporeal shock-wave lithotripsy or simply lithotripsy. Lithotripsy is a non-surgical procedure that uses an external energy source to break a stone into small particles so it can pass. When lithotripsy can't be used, lasers or ultrasound are usually the best alternative.
End-stage renal disease is the permanent failure of the kidneys to function. It can be the result of many different long-term kidney diseases such as diabetes and high blood pressure. Without treatment, death results.
One form of treatment is chronic dialysis, which allows patients to function even though their kidneys are not working. Transplantation of a healthy kidney is another choice. This kidney may come from either a cadaver (non-living) donor or a living relative.
High blood pressure may be caused by a blockage in the arteries to one or both of the kidneys, which is called renal artery disease. Renal artery disease is more common in patients over 50 years of age and, if untreated, can result in permanent kidney failure. When medical treatment does not work or when kidney function is at risk, renal artery bypass surgery may be needed. In bypass surgery, the blood supply to the renal arteries is restored using a technique wherein a detour is made around the narrowed or blocked area by sewing in another healthy blood vessel. This form of treatment is also known as renal vascular surgery.
No one is sure what causes kidney cancer, and there may be no obvious symptoms in the early stages. As a tumor grows, it can produce symptoms similar to those caused by other kidney diseases a dull ache in the side, blood in the urine and weight loss, for example. In its advanced stages, the cancer spreads outside of the kidney and can result in death. Since one kidney can generally perform the tasks of both, most people with kidney cancer undergo a total nephrectomy to remove the cancerous kidney. When a person does not have two normal, functioning kidneys, or when the cancer is very small, a partial nephrectomy is done to remove only the cancerous portion of the kidney.
Kidney disease and kidney cancer, known as Wilm's tumor, also affect children. Some children are born with kidneys that developed abnormally in the womb. These conditions can cause problems with the filtering abilities of the kidneys or cause blockages that keep the urinary tract from emptying properly. If not treated appropriately, these abnormalities may lead to serious problems such as complete kidney failure.
Kidney surgery can be done to repair kidney abnormalities, remove cancerous tumors and preserve kidney function in children of all ages, including newborns.
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 kidney disease or need surgery, talk to your family doctor.
You may want to get a second opinion about the need for surgery or the effectiveness of the form of treatment being proposed.
When the time comes to proceed with treatment, get the names of several doctors and hospitals that have the most experience with diagnosing and treating your disease. Ask the questions that we suggest. Make comparisons. Then make your decision. Be an informed consumer for yourself and your family.
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 Office of Technology Assessment of the U.S. Congress.
The report states that patients about to have surgery can be confident if the hospital performs a high number of relevant procedures, 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 an international equivalent, is a sign that doctors are highly trained in their field. Doctors who specialize, such as urologists, should be board certified in the specialty (urology) in which they are practicing. Most specialties have a national board which 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.
Urology, like many fields of medicine, has become subspecialized into specific areas such as kidney stone disease, renal artery disease, transplantation, pediatrics and cancer. Although there is no board certification in these subspecialties, urologists gain expertise in subspecialties in other ways. They devote a major portion of their practice and their research to a particular subspecialty area and often receive additional training in that area. Surgery for a complex kidney problem is best performed by a urologic subspecialist.
Many of these operations also require the surgeon to have expertise in repairing the veins and arteries of the kidney. This requires special training and experience in renal vascular surgery. Knowing whether the surgeon you are choosing has this type of expertise is important.
Is the urologic surgeon certified by the American Board of Urology?
At the Cleveland Clinic, all staff urologists are certified by the American Board of Urology.*
Does the urologic surgeon have training and experience in a particular subspecialty?
Yes. At the Cleveland Clinic, all staff urologists spend the majority of their time working in one or more sub-specialty areas. There are, for example, urologists who specialize in kidney stones, renal vascular surgery, transplantation, pediatrics or kidney cancer.
Does this surgeon have training and experience in renal vascular surgery?
All urologic kidney surgeons at the Cleveland Clinic have training and experience in the technique of renal vascular surgery.
Is a pediatric urologist available to treat your child?
Yes. Since 1976, the Cleveland Clinic has had a section devoted specifically to children's urologic problems and has specially trained pediatric urologists performing kidney and urologic surgery.
*Board certification or its international equivalent became a requirement at the Cleveland Clinic in 1989 for doctors who are being appointed to the medical full staff.
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, listings, the government, consumer groups, books and magazines such as U.S. News & World Report.
For information about a hospital's status, call the Joint Commission on Accreditation of Health-care Organizations at 708/916-5800.
Is the hospital accredited by the JCAHO?
Are the urologic surgeons and the hospital recognized for medical excellence and leadership?
Yes. The Cleveland Clinic and its physicians are often named among the best in the country.
One of America's Best
In 1994, the department was recognized as one of the top three urology departments in the United States by U.S. News & World Report. This was the fifth consecutive year that U.S. News chose the Cleveland Clinic as one of the best in the country in urology.
Does practice make perfect?
In the case of complex, specialized medical care, the more experience the doctor and the hospital have with the necessary procedures, the better the results usually will be.
Numerous studies suggest that experience is necessary for a doctor to give the best surgical treatment to patients with kidney disease. The National Kidney and Urologic Diseases Advisory Board has suggested that performing a high volume of procedures is an important characteristic to consider when setting guidelines for kidney care.
A study published in Diseases of the Kidney, a 1988 reference manual, emphasized this point, noting that experienced, well-established centers tend to have better kidney transplant results than centers with little experience.
performing a high volume of procedures is an important characteristic to consider when setting guidelines for kidney care.
How many lithotripsy procedures to treat kidney stones have been performed at the hospital?
Since February 1986, more than 2,000 patients have undergone lithotripsy by Cleveland Clinic urologists. The hospital has also been designated as a lithotripsy training center by the American Urological Association.
How many kidney transplants are performed each year?
In 1994, 138 kidney transplants were performed within the Cleveland Clinic Department of Urology, making this one of the largest kidney transplant programs in the United States. Of these, approximately 70% are from cadaver (non-living) donors and 30% from living relatives. More than 2,000 transplants have been performed since 1963, when the Cleveland Clinic's first kidney transplant was performed.
How many renal vascular surgeries are performed each year at the hospital?
Approximately 120 new patients with renal artery disease are evaluated each year at the Cleveland Clinic, with 50 patients undergoing corrective renal vascular surgery.
Cleveland Clinic urologists have been performing renal vascular surgery since 1956.
How many people with kidney cancer are treated each year at the hospital?
Approximately 200 new patients with kidney cancer are treated each year at the Cleveland Clinic. Approximately 100 nephrectomies and 80 partial nephrectomies are performed yearly for kidney cancer. Immunotherapy is being used to treat patients with more extensive disease.
How many children with urologic problems are treated at the hospital?
In 1994, more than 1,500 patient visits were made to our pediatric urologists for the evaluation and treatment of urologic problems in children.
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 care available, and you want it immediately.
Range of specialty departments
Problems that involve the kidneys don't exist in isolation. Whether it's the spread of cancer or complications from high blood pressure, other organs such as the heart and brain may be endangered. Therefore, immediate access to a full range of specialty departments within a facility is critical.
Availability of a full range of specialty departments is also important if complications arise that are related to diagnosing and treating your kidney disease.
Range of diagnostic and treatment options
Surgery for kidney disease is not the only treatment option available; long periods of medical treatment may precede or follow surgery. It's important, therefore, to go to a facility that can treat kidney disease in a variety of ways. That way, you will get the most effective, appropriate and cost-effective treatment available.
For example, some kidney stones are difficult to break up using lithotripsy. For this reason, the Nation-al Institutes of Health, in a Consensus Development Conference Statement, suggested that the complexity of treating large stones required that such patients be managed in settings where lithotripsy, percutaneous nephrolithotomy and conventional surgery are all available.
Is help available from a full range of specialty departments should complications arise?
The Clinic's 600 physicians all on staff full-time provide care in 100 specialties and subspecialties. Because all these specialties are represented at one facility, prompt consultation, diagnosis and treatment are available. The Cleveland Clinic Children's Hospital provides treatment for children with kidney disease.
Does the hospital offer a variety of options for diagnosing and treating kidney disease?
The Clinic offers the range of options below:
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 a hospital are exposed to an important interchange of ideas. They are also 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, according to a study published in the December 1989 issue of the New England Journal of Medicine.
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 trials related to kidney disease?
Does the hospital have a fully accredited residency training program in urology?
The Accreditation Council on Graduate Medical Education and the American Board of Urology have accredited the Cleveland Clinic's residency training program in urology. Presently, 18 physicians are being trained in this program. Advanced postgraduate subspecialty training programs are also available in kidney transplantation, renal artery surgery, male infertility and urologic oncology.
NIH Funds Important Research Here
Among the research funded at the Cleveland Clinic are two important studies being funded by the National Institutes of Health.
-The Cleveland Clinic is conducting research on medical versus surgical treatment of renal artery disease to determine the effect on renal function. This important study was funded by the National Heart, Lung, and Blood Institute. The Clinic is one of the few centers in the country researching kidney failure caused by renal artery disease.
-Research funded by the National Cancer Institute is under way to improve the treatment of kidney cancer by understanding and manipulating the body's immune system.
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 measure to use.
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 are hospitalized at the Cleveland Clinic for treatment of kidney disease and urinary tract conditions are either very satisfied or satisfied with their hospital care.
93% say they would return.
How satisfied are outpatients with their experience at this facility?
100% of patients with kidney and urinary tract problems who come to the Cleveland Clinic for outpatient services are either very satisfied or somewhat satisfied with their experience.
100% say they definitely would 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 hospital room if they have any problems, questions, suggestions or concerns related to service.
Research into Quality of Life Outcomes
The Cleveland Clinic is beginning to measure and determine the health status and quality of life patients experience following their treatment here. Returning to work, being able to perform the usual activities of daily living and being free from pain are some of these important indicators of successful care.
We asked approximately 250 patients with a variety of medical conditions to tell us their health status before, during and after treatment.
More than 80% responded.
All of the patients who responded (100%) thought their ability to function and quality of life generally improved following their care here.
Approximately 70% experienced substantial improvement in physical function, pain relief and energy.
What are the risks?
All risks of death and complications associated with a procedure can't be eliminated, especially for seriously ill patients. However, your risk can be reduced by choosing a hospital with a low mortality rate or, as is the case with some kidney diseases, a high long-term survival or success rate.
The mortality rate, or the death rate associated with a procedure, and the success and survival rates are important measures of your risk and sensitive measures of quality.
Although the greatest period of risk is during the hospital stay, your risks are also affected by the type of patient you are. Mortality rates generally will be higher for patients who are over age 65, or for patients who have multiple medical problems in addition to kidney disease such as diabetes, coronary artery disease or cerebrovascular disease.
Ask the doctor and the hospital for their mortality rates. Try to compare rates for patients most like yourself. It's important to try to compare apples with apples so that you know what your risks really are. This may be difficult, however, because mortality rates may be reported differently. If a doctor or hospital can't give you mortality rates or is reluctant to give information, look at alternatives.
We are providing our rates. To give you an idea of what expected rates might be, we've included, wherever possible, references to nationally recognized studies and guidelines. We've tried to cite studies that are as comparable as possible considering that no one national data source reports standardized rates.
What percentage of patients are free of kidney stones after lithotripsy?
Almost 90% of patients treated with lithotripsy at the Cleveland Clinic have become totally free of stones.
Studies compiled by several other institutions have reported that from 68% to 77% of patients were free of stones at follow-up.
For kidneys from cadaver donors, what is the one-year patient survival rate and the one-year transplant survival rate?
Of patients who received kidney transplants from cadaver donors at the Clinic, 93.13% were alive one year later and 87.05% had transplanted kidneys that were still functioning.
These rates are based on transplants performed at the Cleveland Clinic since 1990.
For kidneys from living relative donors, what is the one-year patient survival rate and the one-year transplant survival rate?
Of Cleveland Clinic patients who received kidney transplants from living relative donors, 94.31% were alive one year later and 90.47% had transplanted kidneys that were still functioning.
These rates are based on transplants performed at the Cleveland Clinic since 1990.
What are the results of surgery to correct kidney obstructions in children?
In the past 15 years, 99% of all Cleveland Clinic pediatric kidney obstructive problems have been successfully repaired in one procedure. There have been no serious complications or deaths.
Studies compiled by other institutions show a 96% success rate for the surgical repair of pediatric kidney obstructive problems.
What is the hospital's mortality rate for renal vascular surgery?
In 1987, the results of 361 corrective renal vascular operations at the Cleveland Clinic were reported in the Journal of the American Medical Association. The mortality rate was 2.1% in 241 patients with atherosclerosis. There were no deaths among 120 patients who had surgery for fibrous disease of the renal artery.
In 1994, a Cleveland Clinic study revealed an operative mortality rate of 2.5% following renal vascular surgery in 175 elderly patients with atherosclerosis.
A study in the 1991 medical textbook The Kidney found operative mortality rates of 5.6% for patients with atherosclerosis and 0.5% for patients with fibrous dysplasia.
What are the long-term improvements associated with renal vascular surgery?
In the Clinic studies mentioned above, high blood pressure was cured or improved and kidney function was stable or improved in 90% of patients after surgery.
What is the hospital's five-year survival rate by stage for kidney cancer?
At the Cleveland Clinic, the five-year survival rate after treatment for kidney cancer is 95% for Stage I, 75% for Stage II and 50% for Stage III.
Nationwide, according to the National Cancer Institute, five-year survival rates are 70% for Stage I, 50% for Stage II and 35% for Stage III.
What are the results of partial nephrectomy for treatment of kidney cancer?
In a 1994 study in the Journal of Urology, the Clinic reported the largest experience in the world with partial nephrectomy to treat kidney cancer. For patients whose cancer has not spread to distant sites, the five-year survival rate was 87%.
Stages of Kidney Cancer
Stages refer to the extent, or spread, of the cancer.
Stage I: The tumor is confined to the kidney.
Stage II: The tumor is larger but cancer cells have not invaded the lymph nodes or blood vessels.
Stage III: The cancer has invaded the renal vein, other nearby blood vessels and/or lymph nodes.
Stage IV: The cancer has invaded neighboring organs or has spread to distant sites.
Pioneering Work in Kidney Disease
The Cleveland Clinic Foundation is recognized worldwide for its comprehensive commitment to understanding, preventing and treating diseases of the kidney and circulatory system. Doctors and scientists here have pioneered many advances in this field.
-Development and refinement of dialysis techniques in the 1950s to enable survival of patients with kidney failure.
-Establishment of one of the first cadaver kidney transplant programs in the world in 1963.
-Pioneering work in the development of extra-corporeal renal (bench) surgery to repair complex kidney disorders.
-Major discoveries in delineating the role of the kidney in hypertension. In 1990, the Cleveland Clinic was designated as a Specialized Center of Research in Hypertension by the National Heart, Lung, and Blood Institute.
-Developments of new techniques for renal vascular repair in older patients with atherosclerosis.
-Pioneering work in demonstrating the relationship between atherosclerotic renal artery disease and kidney failure.
-The largest experience with adjunctive cardiopulmonary bypass and deep hypothermic circulatory arrest to remove vena caval tumor thrombi in patients with kidney cancer.
-Pioneering work in partial nephrectomy, demonstrating that it is not always necessary to remove the entire kidney to treat kidney cancer, and that the healthy portion of the kidney can be safely preserved.
-One of the first hospitals to use laser technology in treating kidney stones.
-Pioneering research on preventing kidney failure in patients with a small amount of functioning kidney tissue.
-Development of better methods to preserve the kidney outside the body in preparation for transplantation.
For An Appointment or Information
If you would like to make an appointment with a Cleveland Clinic urologist, please call one of the numbers below:
800/CCF-CARE (223-2273), Ext. 45600
(toll-free outside Cleveland)
To receive any of the other guides in our "How to Choose a Doctor and Hospital for Your Treatment" series, call one of the numbers below:
(toll-free outside Cleveland)
Cleveland Clinic Florida
Physicians at Cleveland Clinic Florida in Fort Lauderdale have drawn upon the Cleveland Clinic's nationally recognized expertise to establish corresponding innovative programs for managing adults with all forms of kidney disease. This includes kidney cancer, renal artery disease, kidney stones and hypertension. For more information about the treatment of kidney disease at Cleveland Clinic Florida, please call 800/359-5101.
Reprinted with permission by: Med Help International