…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 have a complex, life-threatening disease and are considering undergoing a transplant.
As recently as the early 1980s, transplantation was considered experimental. Today, thanks to improvements in organ preservation, surgical techniques and postoperative care, transplantation is an accepted and well-recognized treatment option for children and adults with certain medical problems. Success rates are high and continuing to improve. The quality of life after transplantation is also continuing to improve due to the development of new anti-rejection and anti-infection drugs. After transplantation, many patients return fully to their former activities with very few restrictions.
In the past 10 years, transplantation has expanded to include many organs and tissues. Kidney, heart, lung, liver, pancreas, bone marrow, bone and cornea transplants, and combinations such as heart-lung and kidney-pancreas transplants are all performed successfully today. In 1994, transplant surgeons at 278 hospitals across the United States performed 18,665 transplants.
Selecting a doctor and hospital for a transplant involves making some difficult and critical decisions. No one has more at stake than you; it is one of the most important decisions of your life.
Selecting a transplant center is a decision that should not be made in a hurry. You should make your decision as early as possible so that you will be prepared, should the need for transplantation arise. The comparisons we talk about in this guide are intended to help you make your decision.
Most of us do more research when we buy a car or a television set than when we choose a doctor and hospital. That may be because we do not 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.
Quality care may be measured in many different ways, and no universal agreement exists on which should be used. At the Cleveland Clinic, however, 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 a transplant, your decision should also include a doctor's qualifications and a hospital's record of success. These quality indicators will help you with that kind of evaluation should you require a transplant.
This brochure discusses these quality indicators in relation to heart, kidney, liver, lung, pancreas and bone marrow transplantation.
A Step-by-Step Guide
This guide helps you choose a doctor and hospital by:
Transplantation is one option in an overall strategy for treating patients with advanced organ disease and some types of cancer. Before making your decision to go ahead with transplantation, you will want to explore with your doctor all of the choices available to you. Your doctor is most familiar with your medical history and can tell you about the different treatments available for your disease.
Transplantation is not always the most appropriate choice, even for people with end-stage disease. Successful transplantation depends in part on careful patient selection, and patients must meet certain medical criteria before they can even be considered for transplantation. If you and your doctor decide that transplantation is your best choice, your doctor will recommend a transplant center.
The United Network for Organ Sharing (UNOS) and the National Marrow Donor Program (NMDP) are non-profit organizations under contract with the United States Department of Health and Human Services to coordinate organ and bone marrow donation and distribution. These organizations have set standards for physical facilities, laboratory capabilities for organ and tissue matching, the recipient selection process and the availability of specialized services.
To be a designated organ transplant center and have access to donated organs and the system that matches donors and recipients, a hospital must meet UNOS standards. Hospitals that wish to have access to the NMDP's computer search and match system for locating bone marrow donors must meet strict NMDP criteria.
UNOS also sets strict clinical standards that program physicians must meet, including specific qualifications for physicians, surgeons and volume of experience.
A team approach that involves physicians from many specialties and other health professionals is essential in providing the complex preoperative, postoperative and follow-up care that a transplant recipient needs. All UNOS and NMDP-participating transplant centers must offer comprehensive services that include experts in many medical specialties, such as radiology, infectious disease and pathology, as well as a range of allied health services that includes physical therapy, rehabilitation and social services.
Even within the UNOS and NMDP networks, differences exist between transplant centers. Centers differ in the types of transplants they offer as well as in their patient acceptance criteria and procedures. Depending on their experience, they may also differ in their outcome records.
Qualifications for transplantation vary depending on the disease. In general, to be eligible for solid organ transplantation such as heart, liver, lung, kidney or pancreas, a person must be classified as having potentially fatal (end-stage) disease, usually under age 60 and otherwise in good physical health.
Patients for transplantation are selected carefully based on guidelines for the specific type of transplant being considered. Only a limited number of organs are available for transplantation, so candidates are carefully selected to increase the chance of success.
Organs for transplantation are usually received from cadaver donors, although kidneys may also come from living donors, related or unrelated. Bone marrow for an allogeneic transplantation may come from the patient's siblings or parents if they are a match, or a national search through the NMDP may locate an unrelated donor. Another option is autologous transplantation in which some of the patient's own healthy marrow is removed and frozen, then returned after high-dose chemotherapy destroys the cancer cells left behind.
More than 33,000 men, women and children nationwide are waiting for an organ transplant. More than one-third of them will die before an organ is found.
Every year an estimated 25,000 healthy people die unexpectedly, usually in accidents. Many of those organs could be used to save the life of someone awaiting a transplant. Yet fewer than 20% of families of people who die in accidents consent to organ donation.
If you wish to donate your organs, carrying an organ donor card is important but not sufficient. Your family still must consent to organ donation in the event of your death. If you feel strongly about organ donation, let your family know.
In northeast Ohio, LifeBanc and the Cleveland Eye Bank are working together to educate the community about the importance of donation.
For more information about organ and cornea donation, call LifeBanc at 216/752-LIFE or 800/558-LIFE (toll-free), or the Cleveland Eye Bank at 216/791-9700.
The Cleveland Clinic Histocompatibility Laboratory was one of the first tissue typing laboratories in the country when it was established in 1968. Tests performed in the laboratory provide information to transplant surgeons and physicians to assist them in identifying the best patient-donor match. The closer the match, the lower the risk of rejection of the transplanted organ or bone marrow.
The Cleveland Clinic Histocompatibility Laboratory performs testing for the Cleveland Clinic Transplant Center and five other organ transplant centers in northeast Ohio and Charleston, W. Va., as well as the Clinic's bone marrow transplant program and the National Marrow Donor Program. In 1994, the Laboratory performed more than 38,000 tests related to transplantation.
The Laboratory is fully accredited by UNOS, the American Society for Histocompatibility and Immunogenetics and several other quality-regulating organizations.
Tissue and cornea transplants are important treatments for certain conditions but, unlike organ transplants, are not life-saving procedures. Tissue transplants are used in reconstructive procedures in children and adults to improve outcome and quality of life.
Bone, cartilage and fibrous tissue transplants are very useful in the treatment of orthopaedic problems such as injury to bone or tissue due to trauma and in cancer. To ensure the best possible results, donor tissue is scientifically matched to the recipient based on laboratory testing. Tissue for transplantation is stored in tissue banks at various major medical centers across the country to be used as needed.
Corneal transplants are an option for patients who have diseases that cause the cornea to lose its clarity or who have suffered corneal damage. Because the cornea has no blood vessels or blood supply, rejection is not usually a problem, and the success rate for corneal transplants is high.
Making the decision that transplantation is the best or only option to treat an individual's disease is a crucial phase of transplant evaluation. Many complications of advanced diseases can be managed with medical or surgical treatment other than transplantation. Alternatives to transplantation exist, and the patient and physician should discuss them.
The first step in receiving a transplant is a referral to a transplant center. You may be referred to a center close to home or one that requires travel, depending on the type of transplant you need, your preferences and your health insurance coverage.
At the transplant center, you will undergo screening and evaluation to determine your eligibility and your risks. The transplant physician and surgeon present each patient's results to the hospital transplant committee. The committee determines which patients are optimal transplant candidates and assigns them to the national waiting list for organs.
Waiting times vary by geographic location and organ and can sometimes be lengthy. In Ohio, waiting times are generally shorter than the national average.
UNOS maintains the waiting list, which prioritizes patients by factors such as medical urgency, blood type, length of time on the list, organ size and weight, and tissue matching. When a donor organ becomes available in a particular geographic area, a patient in the local area is usually the first choice. If no suitable patients are available locally, the search is expanded to the region and the nation.
For bone marrow transplantation, the NMDP maintains a list of potential donors. When a patient is in need of a bone marrow donation, the NMDP conducts a computer search for a compatible donor.
An organ transplant is often scheduled suddenly because an organ has just become available. The time between the organ being removed from the donor and transplanted into the recipient must be as brief as possible.
Transplant surgery is very complex, requiring a team of highly trained, experienced specialists who can respond quickly to any problem that may arise during the procedure.
Following the transplant operation, you will begin a lifelong program of medication to help prevent rejection of the transplanted organ. Your doctor will monitor you closely for signs of infection, which can be a serious complication.
Immediately after transplantation, you will be scheduled for regular checkups at the transplant center. After several weeks, if you had the transplant at an out-of-town hospital, the doctors there may refer you back to your local doctor for your checkups. Your local doctor will continue to monitor your progress in conjunction with the transplant center.
The National Marrow Donor Program (NMDP) is a program authorized by the U.S. Congress that maintains a registry of volunteers willing to be marrow donors if ever matched with specific patients in need. The NMDP's goal is to ensure that every marrow donor volunteer is accessible to each patient diagnosed with a fatal blood disease.
Getting on the registry requires a simple blood test. The characteristics of your blood, along with your name, address and phone number, are then stored in the NMDP's computer data bank. If your blood characteristics ever match those of a person in need of marrow donation, the NMDP would contact you to go through further testing.
For more information, call the NMDP at 800/MARROW-2.
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 the willingness of providers to give you as much information as possible is a good sign. It shows that they are dedicated to maintaining and improving their quality, responsive to patients, and confident of their capabilities.
If you or a family member have an illness that at some future time may require transplantation, you will want to think as early as possible about where to go for the transplant. Ask the questions we suggest in the following pages. Make comparisons. Then make your decisions. Be an informed consumer for yourself and your family.
If you or someone in your family have been told they need a transplant, you may want to seek a second opinion to discuss what other treatment options may be available or confirm that transplantation is necessary. Cleveland Clinic transplant specialists welcome the opportunity to provide a second opinion at the request of the patient, family members, physician or insurance carrier.
How can you use these indicators to judge if one doctor or transplant center 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 United States Congress, Office of Technology Assessment.
According to this report, patients about to have transplant surgery can be confident if the hospital performs a high number of surgeries, 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 has 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 require 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 health care delivery.
Doctors:
Board certification, or the international equivalent, is a sign that doctors are highly trained in their fields. Each specialty has a national board that is responsible for setting standards doctors must meet to be certified. Doctors who are board certified in their specialties 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 areas.
No separate board certification exists for transplantation. However, physicians and surgeons involved in a transplant program should be board certified in their related specialty. For example, heart transplant physicians should be board certified in cardiology and heart transplant surgeons in cardiothoracic surgery. Some excellent doctors are not board certified. Board certification, however, is generally a good indicator of competence and experience.
Hospitals:
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 widely available through the mass media, the government, consumer groups, and magazines such as U.S. News & World Report.
For information about a hospital's status, call the Joint Commission on Accreditation of Healthcare Organizations at 708/916-5800.
Are the physicians who manage the medical care of transplant patients board certified?
100% of Cleveland Clinic staff transplant physicians are board certified in a related medical specialty.
Is the transplant surgeon board certified?
100% of Cleveland Clinic staff who perform transplant surgery are board certified in a related surgical specialty or have the international equivalent of board certification.*
Is the hospital accredited by JCAHO?
Yes. The Cleveland Clinic is accredited by JCAHO.
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. Some of the publications that have recognized the Clinic for excellence include:
U.S. News & World Report has named the Cleveland Clinic one of "America's Ten Best Hospitals" for the past five years since 1990 and singled out the Cleveland Clinic for expertise in cardiology, endocrinology, gastroenterology, urology and cancer treatment.
American Health, April 1993, named the Clinic among the top medical centers in the country.
"The Best in Medicine: Where to Get the Finest Health Care For You and Your Family" (Crown, 1990) singled out the Cleveland Clinic for excellence.
Does the hospital participate in UNOS?
Yes. The Cleveland Clinic meets UNOS's standards as a center for heart, heart-lung, kidney, kidney-pancreas, liver, lung and pancreas transplants.
Does the hospital participate in the NMDP?
Yes. The Cleveland Clinic meets the NMDP standards as a center for bone marrow transplantation.
*Board certification or its international equivalent became a requirement at the Cleveland Clinic in 1989 for doctors being appointed to the medical full staff.
Achieving Medicare Approval
The Cleveland Clinic is a Medicare-approved center for kidney, heart and liver transplantation. Medicare covers transplant services only if they are performed at its approved facilities. To be Medicare-approved, a transplant center must have documented good patient outcomes and comply with certain standards, including experience, patient selection and patient management. In Medicare's view, the approval process helps ensure a greater likelihood of positive patient outcomes.
Does practice make perfect?
In the case of the complex medical and surgical care involved in transplantation, the more experience doctors and hospital have, the better the results usually will be.
UNOS has established volume/experience standards for physicians and surgeons who direct transplant programs. The NMDP has established similar guidelines for bone marrow transplants. Larger, more experienced centers, however, exceed these minimum guidelines.
A center's experience includes the length of time a specific transplant program has been in existence and the total number of transplants performed over the life of the program.
Medicare has set minimum volume criteria for centers performing heart, liver or lung transplants because "a significant number of transplants is needed to maintain the entire transplant team's commitment and skills to assure that procedures are of appropriate quality and safety." In Medicare's view, "volume is generally a strong factor in predicting survival."
To be Medicare-approved for heart, liver or lung transplantation, a program must perform a minimum of 12 heart, 12 liver, or 10 lung transplants annually.
Ideally, a transplant surgeon has expertise in the full range of surgeries related to a specific organ. This breadth of experience in managing patients with many forms of organ disease prepares the transplant surgeon for the most difficult situations or complications that may arise.
How much experience does the transplant center have in organ transplantation?
A center's experience includes the length of time a specific transplant program has been in existence and the total number of transplants performed over the life of the program. The chart below gives the history of the Cleveland Clinic's organ transplant programs, including the year each program started here, how many transplants were performed in 1994, and the total number of each type of transplant performed here since the program began.
Year 1994 Total
Program Started Volume Volume
Heart 1984 64 362
Heart-Lung 1992 1 4
Kidney*
Cleveland Clinic 1963 67 1,836
Charleston 1988 23 184
St. Elizabeth 1987 21 142
Summa Health System 1994 27 27
Total 138 2,189
Liver 1984 52 251
Lung 1990 16 79
Pancreas** 1985 3 18
*Kidney transplantation is performed at the Cleveland Clinic
and its affiliate hospitals.
**The Clinic's pancreas transplant program was inactive for
several years and was reactivated in June 1993.
How many bone marrow transplants are performed each year at the hospital?
Cleveland Clinic bone marrow transplant specialists annually perform more than 150 bone marrow transplants, approximately 40 of which are allogeneic.
To participate in the NMDP, a center must have performed at least 20 allogeneic transplants in the past 12 months.
More = Better
A recent four-year study of heart transplant mortality demonstrated that the risk of mortality is substantially higher at medical centers that perform a small number of heart transplants. The study, published in June 1994 in the prestigious Journal of the American Medical Association, also showed that more than half of the 150 UNOS-approved United States heart transplantation centers perform fewer than 9 heart transplants a year, and more than 60% perform fewer than 12 a year.
A study of liver transplantation, presented at the 15th World Congress of the Transplantation Society, demonstrated similar results for liver transplantation. In this study, centers that performed more liver transplants had lower patient mortality rates.
What services are available?
Hospitals with a broad range of services can treat more complex medical conditions and better handle complications that may occur.
Range of specialty departments
The medical problems that may be treated by transplantation are complex and usually affect multiple organs and systems throughout the body. Transplantation should be considered one component of a broad medical and surgical strategy for managing these problems. Therefore, access to a full range of specialty departments within a facility is important in the overall management of the disease, not only for transplant itself.
Range of diagnostic and treatment options
Appropriate management of end-stage diseases requires a diverse mix of diagnostic, treatment and rehabilitation options so that the specific needs of each individual patient can be met.
A broad range of services is needed to evaluate candidates for transplantation and provide the extensive preoperative and postoperative care needed.
Is help available from a full range of specialty departments?
The Cleveland Clinic's 600 physicians - all on staff full time - provide care in more than 100 specialties and subspecialties, including cardiology, infectious disease, gastroenterology, endocrinology, nephrology, ophthalmology, hematology and medical oncology, pulmonary medicine, cardiothoracic surgery, orthopaedic surgery, general surgery and urology. All of these specialties - in addition to the Cleveland Clinic Children's Hospital - are present in one facility, so multidisciplinary consultation, diagnosis and treatment are readily available.
Does the hospital offer a full range of services for evaluation of transplant candidates as well as pre- and postoperative care?
Transplant-related services available at the Cleveland Clinic include:
At the Cleveland Clinic, transplantation is an integral part of optimal patient management for advanced diseases.
The Clinic offers kidney, heart, heart-lung, liver, lung, kidney-pancreas, pancreas, bone marrow, tissue and cornea transplantation.
To provide the highest quality care for patients facing transplantation and their families, the Cleveland Clinic Transplant Center has developed a surgical-medical team approach. A core of experts with diverse surgical, medical, sociological and technical expertise are assigned to each transplant patient. With their combined talents, resources and experience, they care for patients' physical, mental and sociologic needs as well as their medical requirements. The diversity of the team's backgrounds and areas of specialization has become one of the Cleveland Clinic Transplant Program's strongest elements.
Patient care programs are supported by immunological monitoring, organ preservation, and histocompatibility and immunogenetics laboratories to provide the highest quality preoperative and postoperative testing and monitoring of each patient.
Does the hospital offer alternative treatments that may delay or eliminate the need for transplantation?
The Cleveland Clinic offers many options for patients with end-stage organ disease. When you are referred to the Cleveland Clinic for a transplant, you will undergo a thorough evaluation to determine if another treatment may be the best way to manage your disease. Some of these alternative treatments are listed below:
Heart disease. Some patients with congestive heart failure can be managed with the HeartMate®, a mechanical heart support device that sustains the heart's function until a donor heart is available. The new, battery-powered model, in use at the Clinic, allows some patients to go home with the device while awaiting transplant.
The Clinic is one of only seven institutions worldwide conducting clinical trials related to cardiomyoplasty, which involves wrapping a healthy back muscle around a weak heart to boost its pumping strength.
Kidney disease. Cleveland Clinic kidney surgeons can repair circulation to the kidney to correct and prevent kidney failure in many patients with renal artery disease. They also save kidneys by performing complex "bench" surgery in which the surgeon removes the diseased kidney, repairs it at a separate "workbench" and then replaces it in the patient. Clinic urologic surgeons have pioneered many of these techniques and have accumulated one of the world's largest experiences in their use.
Liver disease. Clinic specialists can use shunts to manage bleeding in the lower esophagus caused by complications of cirrhosis. Shunts can be placed surgically or non-surgically using the latest imaging techniques. This surgery can serve as a bridge to transplant until an organ becomes available or may even eliminate the need for transplant.
Lung disease. Patients with end-stage emphysema may be candidates for volume reduction surgery as an alternative to lung transplantation. By reducing the size of the lungs by 10 to 20 percent, Clinic surgeons can improve lung function and relieve shortness of breath, allowing most patients to discontinue oxygen therapy and return to normal daily activities.
What type of hospital is it?
Selecting a hospital that combines patient care with research and education offers many advantages, particularly in a specialty such as transplantation which changes rapidly.
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 results in an important interchange of ideas between laboratory researchers and clinical practitioners, so that what happens in the laboratory influences what happens in clinical practice and vice versa. 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 technology. At teaching hospitals, physicians are available 24 hours a day.
Choosing a teaching hospital for your care may offer other advantages as well. Private, not-for-profit teaching hospitals had lower mortality rates than other types of hospitals, according to a December 1989 issue of the New England Journal of Medicine.
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 and is affiliated with the medical school at The Ohio State University.
Does the hospital have fully accredited residency training programs in specialties related to transplantation?
The Cleveland Clinic has fully accredited residency and fellowship training programs in anesthesiology, cardiothoracic anesthesia, cardiology, cardiothoracic surgery, endocrinology, gastroenterology, general surgery, internal medicine, hematology and medical oncology, hypertension and nephrology, infectious disease, orthopaedic surgery, ophthalmology, pulmonology and urology.
Does the hospital conduct basic research or clinical trials related to transplantation?
The Cleveland Clinic maintains active basic and clinical research programs related to the underlying diseases that create the need for transplantation such as - high blood pressure, diabetes, heart disease and cancer - as well as programs directly related to transplantation:
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 about 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.
Is everybody happy?
If you ask one person about his or her experience with a doctor or 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 experiences. The hospital can use these results to improve its 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?
94% of patients who are hospitalized at the Cleveland Clinic for transplantation said they were either very satisfied or satisfied with their hospital care.
99% said they would recommend the Cleveland Clinic to others who need a transplant.
How satisfied are outpatients with their experience at this facility?
97% of patients who come to the Cleveland Clinic for transplant-related outpatient services said they were either very satisfied or satisfied with their experience.
Is there a program to help patients and their families with the difficulties that may arise during a hospital stay?
Cleveland Clinic patients may call an ombudsman - another name for a patient-relations representative - if they have concerns about their care.
Patients in the Cleveland Clinic hospital may dial a 24-hour Helpline from their hospital rooms if they have any problems, questions, suggestions or concerns related to service.
The primary outcome indicators reported in transplantation are patient survival rates (the percentage of patients alive after a designated time period) and graft survival rates (the percentage of transplanted organs still functioning after a designated time period).
UNOS tracks graft and patient survival rates for each type of organ transplant at all the transplant centers in the country. For each hospital UNOS calculates the actual survival rates for 3 months, 1 year, 2 years and 3 years. UNOS also calculates what the expected survival rate is for each type of transplant, based on patient characteristics such as age and donor characteristics such as whether the organ came from a living donor or a cadaver donor.
Many factors influence a transplant center's actual survival rate. It can be misleading if used as a sole indicator of quality because it is due to both the effectiveness or quality of the services at a hospital and the characteristics of the patients that the hospital is treating. For example, some transplant centers perform transplants on much sicker patients than others. This hospital may have an excellent transplant program, but its actual survival rates would probably be lower than those of other hospitals.
Although UNOS can account for some of these differences among patients in its calculations, all of the factors that affect survival are not understood, and many characteristics known to affect survival are not measurable. Therefore, the expected survival rates at best adjust only partially for the differences between hospitals regarding the kinds of patients they treat. Because of this, actual survival rate is not all that you need to know to evaluate the quality of the transplant program at a particular hospital.
Expected survival rate is due solely to the characteristics of a hospital's patients. All the patient characteristics that affect survival cannot be taken into account, therefore, the differences between expected and actual survival need to be interpreted very carefully.
On the facing page, we provide one-year survival rates for patients transplanted at the Cleveland Clinic between January 1, 1990 and December 31, 1994.
Outcome in Organ Transplantation
Number Patient
Program of Patients* Survival**
Heart 261 87.4%
Kidney
living, related donor 114 94.3%
cadaver donor 172 93.1%
Liver 175 84.8%
Lung 83 68.0%
*Patients transplanted between January 1, 1990 and December 31, 1994
**Current one-year survival rates, using Kaplan-Meier analysis,
a standard statistical method for calculating survival rates
The Cleveland Clinic's pancreas transplant program was reactivated in June 1993. The number of transplants performed since then is too small to calculate a meaningful survival rate.
UNOS performs a statistical analysis of expected and actual survival rates to show whether the difference between the two is meaningful in terms of quality. This is determined by the size of the difference and the number of transplants on which these survival rates are based. The greater the difference and the larger the number of patients involved, the more meaningful the difference is in terms of quality.
For example, consider a hospital with an expected survival rate for liver transplants of 60% and an actual survival rate of 80%. If the hospital has done only five liver transplants, the difference is not very meaningful and could be due to chance. However, if the hospital has done 500 liver transplants, the difference between the expected and actual survival rates is probably not due to chance. It would more likely reflect a real difference in quality between this hospital and others.
For the consumer trying to select a transplant center, this information means that a transplant program should not be evaluated solely on graft and patient survival rates. According to UNOS, "Patients and their families should also consider...the experience, training and education of the transplant team and the medical and nursing care available throughout the process, from candidate evaluation through transplantation and follow-up; the cost of the transplant procedure, physician services, hospitalization and medication; how close the transplant program is to home and how easy it is to reach; and the support facilities of the transplant center."
All of the Cleveland Clinic's actual survival rates are in line with national averages and UNOS expected survival rates based on the type of transplant and characteristics of the patients transplanted here.
1994 Report Available from UNOS
The complete "1994 Report of Center Specific Graft and Patient Survival Rates" is available free to consumers. The report includes expected and actual survival rates for all the transplants done at every transplant center in the United States between October 1, 1987 and December 31, 1991 and an explanation of how to interpret the data.
To obtain the complete report, call UNOS at 800/24-DONOR.
Outcome in Bone Marrow Transplantation
Most people who undergo bone marrow transplantation have a cancer, such as leukemia or breast cancer. To eliminate the cancer, very high doses of chemotherapy, and sometimes radiation therapy, are given. However, these treatments damage bone marrow, which is vital to producing blood. To restore normal function after these treatments, bone marrow is transplanted into the patient.
Patient survival following bone marrow transplantation depends on a variety of factors. The first is surviving the period immediately following the transplant. During this period, infections, bleeding and other complications can develop before the transplanted marrow cells begin to grow. Outcome after an allogeneic bone marrow transplant - which involves transplanting marrow from someone else whose bone marrow is a match to yours - may be complicated further by graft rejection and what is called graft-versus-host disease. This occurs when the donor's marrow recognizes your system as foreign and the donor white cells attack your immune system.
After this critical period immediately following the transplant, survival depends largely on whether the cancer recurs. Many factors influence recurrence, including the type of cancer and how advanced it is when first diagnosed, as well as a person's age and overall health status.
Because cancer is a very complicated group of diseases and because of the many factors that can influence recovery, no one can precisely predict whether bone marrow transplant will cure the cancer or how long each person will live following treatment.
What you can do is discuss with your doctor several different outcome indicators and the hospital's rates for each. We suggest asking about the hospital's survival rates for the period immediately following bone marrow transplant. These are referred to as peri-transplant or 100-day survival rates. These rates are indicators of how well a hospital can handle complications that occur immediately following bone marrow transplant.
What is the peri-transplant survival rate for autologous bone marrow transplantation?
The majority of patients undergoing autologous bone marrow transplantation are expected to survive the high-dose chemotherapy and autologous transplant.
In 1994, the Cleveland Clinic's minimum 100-day survival rate for autologous bone marrow transplant was 98.4%.
In Ohio, the minimum 100-day survival rates for autologous bone marrow transplant are 80%.*
What is the peri-transplant survival rate for allogeneic bone marrow transplantation?
In allogeneic bone marrow transplantation, the first 100 days is the critical period. During this time, survival is influenced by managing infections, preventing and treating graft rejection and graft-versus-host disease, and by the type and stage of each person's cancer.
In 1994, the Cleveland Clinic's minimum 100-day survival rate for allogeneic bone marrow transplantation was 80%.
In Ohio, the minimum 100-day survival rates for standard-risk patients are 70%.*
*Ohio Bone Marrow Transplant Consortium Standards
About Survival Statistics
Cancer survival statistics are averages based on large numbers of patients. They cannot be used to precisely predict what will happen to one person.
"Only your doctor knows enough about your case to discuss the course of the disease and its possible outcomes for you," according to "Cancer Facts," a report from the National Cancer Institute.
It is important to understand, however, that even the doctor who is familiar with the patient's medical history and current condition cannot tell someone exactly what to expect. Each person is an individual whose body may react to cancer and its treatment in ways completely different from the average patient.
Pioneering Work in Transplantation
Since 1963, when Cleveland Clinic surgeons performed the first kidney transplant in Ohio, the Clinic has been recognized as a leader in the field of organ transplantation and has been committed to staying in the forefront of transplant technology. Other pioneering developments in transplantation at the Cleveland Clinic include:
For Appointments or Information
If you would like to make an appointment at the Cleveland Clinic Transplant Center, please call one of the numbers below:
216/444-2394
(in Cleveland)
800/223-2273, Ext. 42394
(toll-free outside Cleveland)
If you would like to receive any of the other guides in our series, "How to Choose a Doctor and Hospital for Your Treatment," you may call one of these numbers:
216/444-8919
(in Cleveland)
800/545-7718
(toll-free outside Cleveland)
Cleveland Clinic Florida
Since 1963, when Cleveland Clinic surgeons performed the first kidney transplant in Ohio, the Clinic has been recognized as a leader in the field of organ transplantation and has been committed to staying in the forefront of transplant technology. Other pioneering developments in transplantation at the Cleveland Clinic include:
Physicians at Cleveland Clinic Florida in Fort Lauderdale have drawn upon the Cleveland Clinic's nationally recognized expertise to establish innovative programs for managing patients with end-stage organ diseases and cancer. Patients who are managed by Cleveland Clinic Florida physicians can be referred to the Cleveland Clinic if transplantation becomes necessary. For more information or to make an appointment at Cleveland Clinic Florida, please call 800/359-5101, extension 2854.
Reprinted with permission by: Med Help International