Choosing a transplant center is a very important decision. Institutions may just be starting a bone marrow or blood stem cell program, or they may have vast experience. Some may be excellent for adults, but have limited pediatric experience. Some may allow you to room in with your child; others may isolate the child for weeks. Protocols vary among institutions, as well. The center closest to your home may not provide the best medical care available for your child or allow the necessary quality of life (rooming in, social workers, etc.) that you need. Additionally, your insurance plan may require you and your child to go to a transplant center with which they have an existing contract.
To obtain a list of SCT transplant centers, call for the current "Transplant Center Access Directory" from the National Marrow Donor Program (NMDP) Office of Patient Advocacy. The directory lists all SCT centers affiliated with the NMDP that perform transplants from unrelated donors. The directory includes the location of the center, diseases treated, and costs. To obtain a free copy, call (800) 526-7809. You can also visit their Internet site at http://www.marrow.org.
The Autologous Blood and Marrow Transplant Registry (ABMTR) collects patient data on autologous blood and marrow transplants performed in North and South America. More than 450 transplant centers from 48 countries are listed on their web site at http://www.ibmtr.org (click on transplant centers). You can contact them by phone at (414) 456-8325.
To help you learn about the policies of different transplant centers, here are some questions that you might ask:
• How many pediatric transplants did the institution do last year? How many of the type recommended for my child?
• How successful is your program? What are the one-year, two-year, and five-year survival rates for children with the same type and severity of disease? (Remember that some institutions accept very high-risk patients, and these statistics would not compare to those of a place that only performs less risky transplants.)
• How do cure rates with immediate transplantation compare with overall cure rates using chemotherapy first and transplantation only if the child has a relapse?
• What are the antigen match requirements? (Some institutions require a six-antigen match, others require five out of six, others permit a minor mismatch at the A or B antigen site but not at other antigen sites.)
• What is the nurse-to-patient ratio? Do all the staff members have pediatric training and experience?
• What support staff is available (educator, social worker, child life therapist, chaplain, etc.)?
• Will my child be in a pediatric or combined adult-pediatric unit?
• What are the institutions rules about parents staying in the childs hospital room?
• What on-site or nearby housing is available for families of children undergoing transplant? What are the costs for this housing?
• What are the institutions anti-infection requirements? Isolation? Gown and gloves? Masks? Washing hands?
• Describe the transplant procedure in detail. Is radiation part of the pretransplant treatment?
• Explain the risks and benefits of the transplant.
• What is the average length of time before a child leaves the hospital? For a child who has been discharged from the hospital but whose home is far away, how long before he can leave the area to go home?
• What will my child's life be like, assuming all goes perfectly? What will it be like if there are problems?
• What are the long-term side effects of this type of transplant? What long-term follow-up is available?
• Explain the waiting list requirements.
• How much will this procedure cost? How much will my insurance cover?
Many transplant centers have videos and booklets for patients and their families to explain services and describe what to expect before, during, and after the transplant. Call any transplant center that you are considering and ask them to send you all available materials.
The head of oncology at UCLA comes to our city every two months to follow up on the kids who have been treated there. It was a big draw to us to have post-transplant follow-up at home, rather than having to travel a great distance to get back to the center. The other thing was that children are not put in laminar air flow, and families weren't required to cap and gown, only scrub their hands. Since I'm allergic to those hospital gloves, this allowed me to stay with my daughter throughout. We did, however, call around to several centers to compare facilities, costs, and insurance coverage.
Making an informed consent is a serious decision when considering a life-threatening procedure such as a bone marrow or other type of stem cell transplant. It is very important to work closely with your oncologist and treatment team when making this decision. Do not hesitate to keep asking questions until you fully understand what is being proposed. Ask the doctors to use plain English if they are using complicated medical terms. Bring a tape recorder or friend to help remember the information. Many centers require the assent of children 7 to 18 years old in addition to the consent of the parent. Do not sign the consent form until you feel comfortable that you understand the procedure and have had every question answered.
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