When I learned that a stem cell transplant was my best option, someone gave me great advice: “The doctors will do everything they can to get you well. That’s their job. Your job is to stay informed, ask questions, stay optimistic and focus on what you can do in the present.”
In the early days of transplantation, stem cell transplants were offered by only a handful of medical centers worldwide. Today aproximtately 200 hospitals perform transplants in the U.S. alone. How do you decide which medical center is best for you?
Depending on your insurance coverage, the choice may be wide open or very limited. Many U.S. insurers negotiate contracts with a handful of transplant centers and require their plan enrollees to choose one of these centers. Although such plans limit your choices, the designated medical centers are usually major institutions with a highly experienced transplant team that provides excellent care.
Your local doctor may recommend a particular center for treatment. The recommendation may be based on obvious factors like the transplant team’s experience and reputation. Other less obvious factors may include the relationship your doctor has with the transplant team, and his or her prior experience getting information from the transplant center when you return home for follow-up care. Ask why your doctor recommends one center over another, and don’t hesitate to explore other transplant centers as well.
If you are free to choose between different centers, there are several factors you’ll want to consider.
Accreditation
The Foundation for Accreditation of Cellular Therapy (FACT) is an organization that inspects transplant programs and accredits those that meet FACT standards. FACT accreditation is a sign that the program has passed a rigorous inspection and is considered by experts in the field to be a quality transplant program.
FACT approval must be re-certified every three years. Certification requires a review of the center’s policies, all clinical facilities, and personnel. Standards of care change and improve over time and every certified center must remain current and demonstrate an
ongoing strong quality improvement plan.
Doctors
The doctors who care for you should be licensed physicians with board certification in hematology, medical oncology, immunology or pediatric hematology/oncology. Other specialists involved in your care should also be licensed and board-certified in their specialties.
Some questions you may want to ask about doctors include:
- How much transplant training and experience do the transplant doctors have?
- Will a transplant physician be on call 24/7 to handle emergencies and answer questions?
- If you have a pre-existing medical condition that may complicate your treatment, such as a heart or lung problem, do the doctors have experience handling patients with similar problems?
- Does the transplant team have around-the-clock access to other licensed specialists who may need to be involved in your care, such as doctors who are board-certified in:
- surgery
- pulmonary medicine
- intensive care
- gastroenterology
- nephrology
- infectious diseases
- cardiology
- pathology
- psychiatry
- radiation therapy
- How much experience do the specialists have in managing complex problems that may arise during transplantation?
If your child is the patient, find out whether the doctors, nurses and support staff have training and experience in treating pediatric patients. Children are not just small adults. Their growing bodies may react differently to drugs, and their emotional needs are different as well.
Advanced Practice Providers
Your transplant team may include nurse practitioners and physician assistants. These are personnel with extensive training and medical experience who perform many of the same duties as doctors. Ask how much training and experience they have in managing
transplant patients.
Nurses
A highly trained, experienced team of nurses is a critical component of a good transplant program. It’s the nurses who spend the most time with patients. They must be able to quickly identify problems and respond appropriately.
Questions to ask about the nursing staff include:
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How many registered nurses and nurse practitioners will be involved in your care?
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How many have been trained and certified in hematology/oncology?
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How much experience have they had caring for transplant patients?
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What is the nurse-to-patient ratio? Do the nurses receive ongoing education about caring for transplant patients?
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Does the center have specialized transplant nurse coordinators and nurse navigators to help patients through the process?
Psychosocial Support Services
Undergoing a blood stem cell transplant is not only physically difficult but emotionally taxing as well. You may find the emotional strain more difficult to handle than the physical discomfort Even if you have never before sought counseling, you may need the help of a psychiatrist, psychologist, social worker or religious counselor to help you cope.
Psychosocial support services offered by transplant centers vary considerably. Find out what programs are available to help you and your family members manage anxiety and stress.
Treatment Plans
The treatment plan or ‘protocol’ for a particular disease can vary from center to center. The type and dosage of chemotherapy drugs may differ. Some centers may be researching new methods of preventing or handling transplant complications and may invite you to participate in a clinical trial testing the new treatment. Some may do part of the treatment in an outpatient setting, rather than in the hospital.
The risks associated with various treatment plans may differ as well. Ask what is known about the effectiveness and risks associated with the particular protocol suggested for you. Discuss with the team how they will manage complications that may arise.
Number of Transplants Performed
Although the training and experience of the transplant team members are the most important factors to evaluate, the number of transplants performed by a center can often give you a rough idea of the team’s experience. Keep in mind, however, that transplant team members often relocate to different hospitals. Fifty transplants may have been performed at a center during the past two years, but not necessarily by the team that will care for you now.
You can learn how many transplants have been performed at a transplant center at bmtinfonet.org/transplantcenters.
Success Rates
The question asked most often by patients is ‘Which transplant center has the best success rate?’
A successful transplant can be defined in different ways. It may mean that the stem cells engrafted and the patient did not die of complications while in the hospital or clinic. Or it may mean that the patient lived one, three, five years or more without a recurrence of the disease. When discussing success rates with transplant centers, be sure you understand how they are defining the term.
Many factors influence a transplant center’s success rate. For example, a hospital that accepts only prime candidates for transplant — young people, those in an early stage of their disease and those who have responded well to prior treatment — will likely report better success rates than centers who accept older or sicker patients.
NMDP.org/tcdirectory/search provides data on one-year survival rates at U.S. transplant centers for allogeneic transplants (transplants using donor cells). The directory presents both the percentage of patients alive a year after transplant at each center as well as whether the center’s survival rate is below, similar to or above what is expected, taking into account factors like:
- the age of patients treated
- their disease stage
- other pre-existing health issues that can affect transplant outcomes.
When using these data, focus on whether the center’s actual survival rate is similar to, below or above the expected rate, rather than on raw survival percentages at each center. This comparison takes into account the variability of patients treated at centers and is a more accurate way to compare centers' success rates than looking at survival percentages.
Transplant Centers Outside the U.S.
If you are searching for a transplant center outside of the United States, NMCP® (formerly Be The Match) maintains a list of international transplant centers, with whom it is affiliated. The Center for International Blood & Marrow Transplant Research (CIBMTR) also maintains a list of international transplant centers.
Should I Get a Second Opinion when Choosing a Transplant Center?
When possible, visit the transplant centers you are considering and meet with the staff who will care for you. If the center is located far from you, some centers can arrange a video conference instead.
Don’t be afraid to get an opinion about the best treatment plan for you from more than one transplant center, and don’t be surprised if they don’t all agree. Along with your doctor, weigh the risks and benefits of each treatment plan before choosing the center that’s right for you.
The Bottom Line
Happily, there are many excellent transplant programs that provide top quality medical care. For most patients, no one program will clearly be superior. Rather, you and your doctor will be able to choose among a number of highly qualified transplant programs.
Keep in mind that you and your family are important members of the transplant team. It’s important that you’re comfortable with the staff at the center where you’ll be treated, and that worries about issues such as insurance, allowing your spouse to continue working, and having family members well cared for are kept to a minimum.
Working with your doctor, you should be able to identify the programs that best suit your family’s medical, financial and emotional needs.
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Next Page: Pre-Transplant Tests
Updated August, 2023
