In the early days of transplantation, blood stem cell transplants were offered by only a handful of medical centers. Today, more than 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 team 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.
When choosing a transplant center, 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 training and experience do the transplant doctors have in caring for stem cell transplant patients?
- 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 personnel have extensive training and medical experience and 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 critical to a good transplant program. It’s the nurses who spend the most time with patients. They must be able to identify problems and respond appropriately quickly.
Questions to ask about the nursing staff include:
- How many registered nurses and nurse practitioners will be involved in your care?
- How many have been trained and certified in hematology/oncology?
- How much experience have they had caring for transplant patients?
- Do the nurses receive ongoing education about caring for transplant patients?
- 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 sought counseling before, you may need the help of a psychiatrist, psychologist, social worker, or religious counselor to 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.
Financial Counselors
A stem cell transplant is costly. An experienced financial counselor at your transplant center can help you:
- maximize your health insurance benefits
- estimate what you will need to pay for medical services and prescriptions not covered by insurance and insurance co-pays
- estimate non-medical expenses such as travel, lodging food, and other incidentals while you are being treated
- identify organizations that offer financial support
Ask the transplant team what sort of financial support will be available to you, and how experienced they are in getting insurance to cover transplant costs.
Some centers have special arrangements with local hotels or other lodging to house patients and family members at low or no cost. If you will be transplanted out of town, check whether your insurance policy supports relocation to the transplant center. Ask if teaching services are available while your child is in the hospital and during the transition back to school.
Support Services for Children
If your child is the transplant patient, ask whether child life specialists will be available to help your child understand what is happening during the transplant and relieve your child's anxiety. Ask if teaching services will be available while your child is in the hospital and to help with the transition back to school.
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 annually 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.
View BMT InfoNet's Transplant Center Directory to learn how many transplants have been performed at each center you are considering.
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 several 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 and without ongoing complications. When discussing success rates with transplant centers, be sure you understand how they define 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 that accept older or sicker patients.
NMDP provides data on one-year survival rates at U.S. transplant centers for allogeneic transplants (transplants using donor cells).
When using the NMDP data, focus on whether the center’s actual survival rate is similar to, below, or above the expected rate, rather than on the raw survival percentages at each center. This comparison will take into account the variability of patients treated at centers and is a more accurate way to compare centers' success rates than comparing raw survival percentages at each institution.
Finances
Stem cell transplants are very costly, even if insurance pays for all or most of the procedure. In addition to medical expenses, you may need to pay other expenses, such as:
- travel and lodging if you're being transplanted out of town
- meal expenses
- large insurance co-pays and deductibles.
If your caregiver must take time off from work to be with you, that can add to the financial strain.
Ask if the transplant team will help you find financial assistance, if needed, to defray these expenses.
Transplant Centers Outside the U.S.
If you are searching for a transplant center outside of the United States, NMDP® (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?
Don’t be afraid to get a second opinion about the best transplant center for you. It is common for transplant patients to do so in order to weigh all their treatment options.
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, the center may be able to arrange a video conference instead.
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 loved one 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.
