What Is the Most Useful Information Provided to Stem Cell Transplant Recipients?.

Quality of life for stem cell transplant patients hinges partly on expectations of health outcomes. This study was designed to determine how information provided to patients before stem cell transplant was used in their decision making process and their coping with diagnosis, therapy and complications. Anonymous questionnaires were sent to 127 patients transplanted 2001 through 2004. Patients indicated the resources they used (transplant physicians, transplant coordinator, ancillary staff, and former patients; referring physicians; audiotapes of the information session; national organization booklets; and websites) and ranked these resources by helpfulness in learning about the transplant process, as well as in coping with their diagnosis. Responses were obtained from 69 patients (54%) representing 30 allogeneic and 39 autologous procedures. Of the patients questioned, 96% believe they were well informed about their disease and transplant process. The first information session with the physician was recorded and was scored as the most important for understanding the disease and transplant process, followed by the information session with the transplant coordinator. These sources were also ranked as the two most helpful in coping with dianosis, treatment and complications. Booklets from national organizations, such as the Leukemia and Lymphoma Society and National Cancer Institute, were used by 46% of the patients and were scored slightly more important than meetings with former patients, but less important than discussions with the referring oncologist. Websites, including our own website, were used by only 30% of the patients and were not regarded as highly important. The value of tape recording the information session with the physician was analyzed in more depth. Of the 62 patients who had received a usable recording, 84% considered the tape useful. Fifteen percent of the patients did not listen to the audiotape, 29% listened once, 38% listened twice, and 18% listened three or more times. In addition to the patients, spouses (73%), children (38%), parents (21%), friends (19%) and other health-care providers (6%) listened to the audiotapes. Eighty-eight percent of the patients studied felt they received most or all of the information they needed, while the remaining 12% wished they had received more. Time spent with transplant physicians and coordinators explaining the rationale, process, risks and benefits of the transplant procedure is a pivital part of the information gathering process. Web-based information was relatively unimportant for the patients studied, however, demographics such as age, education level adn financial resources play a part in the process of retreiving information. The audiotape was also recognized as an important, and frequently referred to, source of information provided to our patients. This suggests that patient-specific human interactions between patients, physicians and coordinators could never be completely replaced by written information from pamphlets or websites. The role of recording the information session, therefore, deserves further attention in a prospective study.