Cross-Sectional Patient Survey on the Need for a Long-Term Follow-up Program after Autologous Hematopoietic Cell Transplantation

Abstract

 While the importance of long-term follow-up (LTFU) programs after allogeneic hematopoietic cell transplantation (HCT) has been recognized, their role after autologous HCT is less apparent. To evaluate patients’ need for a LTFU program after autologous HCT and the incidence of late effects, we conducted a single-center cross-sectional questionnaire survey. We included adult patients who received autologous HCT for hematological malignancies at our hospital from January 1993 through February 2014, who remained free of disease progression, and who made regular visits to our clinic. Among 231 patients who received autologous HCT, 114 were alive and free of relapse. Questionnaires were mailed to 71 patients who had visited our clinic, and 43 (61%) responded. Twenty-eight patients (65%) reported 53 disorders that were diagnosed after discharge. The most frequent of these was infection (n=23), with varicella zoster virus accounting for 13 cases. More than 80% of the participants reported experiencing conditions other than the primary disease after discharge, and 91% suggested the need for a LTFU program after autologous HCT. Although we acknowledge the risk of selection bias and under- or overestimation due to the small cohort size, these results may provide a foundation for constructing a LTFU program after autologous HCT.