Long-Term Follow-Up

Seattle Cancer Care Alliance (SCCA) and Fred Hutchinson Cancer Research Center (Hutchinson Center)  have the only dedicated Long-Term Follow-Up (LTFU) program in the country designed to provide life-long support to people who have had a hematopoietic cell transplant through SCCA or Fred Hutchinson Cancer Research Center before SCCA was formed in 1998. This includes approximately 4,500 patients, both children and adults, some of whom had a transplant more than 25 years ago.

When does Long-Term Follow-Up start? In the first two to three months after your transplant, you will receive direct care by one of the four transplant teams. Typically, we discharge patients to their referring physician for ongoing follow-up care three months after their transplant. (Some patients are discharged sooner or later depending on the type of transplant and their medical condition.)

In preparation for your discharge, we will give you a comprehensive transplant departure evaluation to check the status of the disease for which you had your transplant, screen you for chronic graft-versus-host disease, check the status of the graft (how well the transplanted cells are working), and assess your immune system. In addition, you will meet with one of our LTFU nurses to go over the things you need to know before going home, signs to watch for, and recommendations about how to prevent and treat late complications. We will also ask you to complete a health questionnaire to provide baseline information about your experience up to that point. This questionnaire will be filed in your LTFU medical records.

Follow-up continues after you are discharged and return to the care of your previous doctor. Some effects of your transplant and treatment may begin to clear up in a matter of months. Others may develop later or affect you for many years and possibly the rest of your life. Most people who receive a transplant need some level of long-term follow-up care for the rest of their lives. Specifics about follow-up and monitoring depend on the type of transplant you had, your diagnosis, your age, your gender and other factors. Our LTFU program provides follow-up and treatment guidelines for all patients who have a transplant at SCCA and FHCRC.

What do I get through the LTFU Program?
Here are the elements we have in place to help support you over the long term:

• Every person who has a transplant receives a detailed Resource Manual to take home. Chapter 7 is dedicated to long-term recovery. Before you leave SCCA to return to the care of your primary physician, one of our LTFU educators will sit with you and your family to walk you through the manual and make sure you understand how to take the best possible care of yourself—and when to see a health-care professional. In addition, we will give you the LTFU office contact information so you and your referring physician can consult with our transplantation experts whenever needed.

Chapter 7: Long-Term Recovery from the “Patient & Caregiver Resource Manual for Adult Allogeneic Patients”

Chapter 7: Long-Term Recovery from the “Patient and Caregiver Resource Manual for Adult Autologous Patients"

• Our medical staff provides life-long telephone consultations for you and your health care providers. This means you and your doctor at home—whether home is in Seattle or elsewhere—have access to our transplant experts for advice. Our medical staff can talk with you about how to manage any late complications you may be experiencing, including the newest interventions, and alternatives to address recurrence of your original disease, if this occurs.
• We provide direct follow-up care, including comprehensive annual visits and specialized care, on site at SCCA. Most of our patients return for at least one comprehensive annual visit. We see some patients more frequently for clinic visits, as needed. For instance, people who have chronic graft-versus-host disease may need LTFU clinic evaluations or care several times a year. We will figure out a schedule for you based on your unique situation.
• We monitor your post-transplant experience as part of our long-term follow-up research program. We send questionnaires to each patient annually to assess their health status and other long-term issues. This helps us improve transplant outcomes for future patients. It also helps us improve follow-up care for all our current patients, including you. We can also help connect you to clinical trials that are looking for better ways to prevent and treat late effects of transplant or manage recurrent malignancies after transplant

Children & Long-Term Follow-Up
There are special follow-up issues for childhood recipients such as potential effects on growth and development. Please read through this section and also visit our section on pediatric bone marrow transplant, including pediatric transplant long-term follow-up.

More Information

• Find out more about the reasons for long-term follow-up after your transplant.
• Join our series of weekly, educational brown bag lunches—either in person or by phone—to talk with other transplant recipients and experts from our team.
• Read some of our patients’ stories about long-term follow-up.
• Sign up for the long-term follow-up e-newsletter from the Fred Hutchinson Cancer Research Center, or read it online.

May 2007