Masonic Cancer Center, University of Minnesota

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Umbilical Cord Blood Transplantation Program
One Family's List of Critical Questions

This list was provided by the Schepperle family of California. The family posed these questions to the Umbilical Cord Blood Transplantation Program before choosing the University of Minnesota as the facility where their daughter would receive an umbilical cord blood transplant. They have allowed us to reprint the questions for families who may want to discuss them with their own doctors.

  1. How many cord transplants have been performed at your center? 
  2. How many transplants—marrow or cord blood—have been performed at your center? 
  3. How long has the transplant program existed? 
  4. Success rate for the disease your child has for cord blood and marrow:
    • first 100 days
    • first year
    • two or more years  
  5. Number of doctors dedicated to the transplant program? 
  6. Are doctors assigned to a patient or do they rotate? 
  7. Will your treatment plan be based on standard or research protocols (and what is the plan)? 
  8. What common complications can we expect during and after transplant? How do you plan to handle them? 
  9. Are specialists available around the clock in the event a complication arises -- i.e., gastrointestinal complications, heart problems, neurology and control of infectious diseases? 
  10. What diseases do you primarily treat or transplant for?
  11. Center's area of specialization/expertise? 
  12. When do you use peripheral blood stem cells vs. bone marow vs. cord blood?
  13. Total Body Irradiation (TBI) and/or chemo-only option: Is TBI more effective than chemo? What is the proof? 
  14. What chemo do you use with TBI? 
  15. What chemo-only therapies do you use? 
  16. Side effects of TBI: 
    • Growth problems in children 
    • Pulmonary complications 
    • Neurological complications (long- or short-term memory loss; difficulty concentrating; personality changes) 
    • Infertility 
    • Cataracts 
  17. Side effects of Chemo? 
  18. Age at which TBI is safer? 
  19. How many transplants can a child have and in what period of time, should they be needed? 
  20. Weight/age for sibling to donate? 
  21. How important is patient's strength/health entering in to the transplant?? 
  22. Should we transplant while patient is recovering from current treatment or should we back off and let her get strong: i.e., is there a break period?) 
  23. Will transplant greatly improve odds of long term success over existing chemo regimen? 
  24. What cell count is optimal for umbilical cord blood transplant? 
  25. What is the lowest cell count that can be used? 
  26. Can we expand the existing cord blood cells? 
  27. Is cord blood more effective than marrow? 
  28. What is the risk of graft-versus-host disease (GVHD)? 
  29. Does cord blood have less GVHD than marrow? 
  30. Does cord blood take longer to engraft than marrow? 
  31. How long does it usually take to engraft cord/marrow? 
  32. What are the chances of graft failure? 
  33. What are the chances of contracting an infection while waiting for engraftment? 
  34. When are the risks for infections greatest? 
  35. What are the chances of having a serious infection? 
  36. Average days in hospital after transplant? 
  37. Average days to stay close to facility for follow up? 
  38. Can follow up be transferred to another facility? 
  39. What do you do when cord blood doesn't engraft as quickly as expected (or doesn't engraft at all)? 
  40. What is the experience of the nursing staff? Are they specifically trained in BMT? 
  41. Are nurses required to participate in ongoing training programs for BMT? 
  42. Is nursing staff specifically trained to work with pediatric patients? 
  43. What is the nursing-to-patient ratio? 
  44. Are the BMT ICU nurses the same for my child or will they be moved to a different unit? 
  45. Is there a dedicated Pediatric BMT Center? 
  46. Is there school/education for the patient while admitted/outpatient? 
  47. Activities for patient while admitted? 
  48. Private room - facilities in room? 
  49. Is supportive care available? 
  50. Living accommodations near hospital? 
  51. Can Mother and Child (newborn) stay with patient in room? 
  52. Do you provide support for follow up physicians -- out of town? 
  53. Can we have the names of patients to talk with that have been treated for a similar situation? 
  54. Can the patient receive Vitamins/Herbs/Acidophilus before/during/after transplant?