Long–Term Follow–Up Program is a model post–transplant support system for patients and doctors
For transplant patients and their care providers, some of the most important things that determine the success or failure of therapy come months or even a few years after the last bag of stem cells has been infused. Complications of stem–cell transplants are a fact of life for many patients and not just in the first three months after the transplant, once thought to be the most critical time.
A survey published in 2000 of patients who had transplants for leukemia, lymphoma or myeloma between 1991 and 1997 showed they had an equivalent or higher mortality rate from three months to three years after transplant when compared to the first three months.
Transplantation therapy has improved — especially from instituting the procedure earlier in the disease course and from more effectively preventing infections and acute graft–vs.–host disease (GVHD). With this improvement in results during the first three months after transplantation, the study of late complications that influence the overall health of patients has become a science all its own. Complications can affect just about every organ system in the body, and secondary malignancies are now recognized as an important potential consequence of stem–cell transplantation.
For centers that perform a lot of transplants and treat patients from across the country, a dedicated long–term follow–up program is essential for patient care after the transplant as well as for research to learn more about the how and why of health problems caused by complications. The Long–Term Follow–Up Program at Fred Hutchinson Cancer Research Center was one of the first such programs established in the United States. The program serves as a model support system for the kinds of services and communication that patients and their community physicians need after a transplant, especially when patients live too far away to be evaluated at the Center.
In October 2005, a paper written by Dr. Paul Martin, LTFU director, and Dr. Debra Friedman, director of the pediatric LTFU program, was published as part of the educational program for the International Society of Hematology's annual meeting. It provided a "how we do it" summary of LTFU and explained the importance of collecting clinical and research information from patients and their referring physicians.
Since the publication of the article, other transplant centers have shown increased interest in the Center's program. Most significantly, a large delegation from King's College in London, one of England's largest and oldest educational institutions, visited the program in May. Martin said the group was very interested in how the Center follows its transplant patients.
The LTFU was designed not only to serve the needs of patients and referring physicians but also to enable collection of data that could be used for research related to outcomes after transplant, Martin said. This is the aspect of the program where patients and referring physicians will see some changes being instituted to make it easier for them to supply information. For one, the annual health questionnaire that LTFU patients receive will gradually make its way online this year to allow for Web–based responses.
Because the LTFU cannot conduct detailed clinical evaluations for patients at frequent intervals, and because it cannot always obtain the relevant medical records, the program has used patient self–reported data as one important source of information for long–term follow–up studies. Data from the patient questionnaires confirmed information from published reports, especially with regard to symptoms and attitudes about their experience after transplantation. Shortness of breath with exertion, fatigue, muscle cramps, difficulty sleeping at night, and problems with memory and concentration were frequently acknowledged as problems for patients who had survived for more than five years after a transplant. "Comments from patients provided insights into the highly variable experiences of patients," Martin said.
The patient response rate has been about 50 percent. "As a way of improving response rates to the questionnaire, we have included a selection of anonymous quotations from interesting or eloquent comments with the questionnaire each year," Martin said. "We have also provided patients with summary data from the questionnaires. Many patients have found it useful to know that their problems are not unique."
The LTFU staff also send questionnaires to local physicians. This is a one–page checklist designed to capture data about the same medical complications that are routinely abstracted from medical records and entered into the LTFU database. In addition, the LTFU provides an "Alert Fax" form that referring physicians can use to notify the staff about high–priority events such as death of a patient, diagnosis or change in therapy of chronic GVHD, diagnosis of recurrent malignancy, second malignancy or myelodysplasia, or changes in address or other contact information for the patient or physician.
Most of the information from physicians comes not from questionnaires but as a result of their calls about patient care. Many doctors don't have time to respond to questionnaires, but they do call when they have questions about specific problems. The LTFU has three nurses and a nurse practitioner dedicated to taking calls from patients, doctors and family members, which aids greatly in continuity of patient care. The LTFU keeps a written record of all these calls, and the information is used both for patient care and for research.