Abstract

Background: Patients with hematological malignancies who undergo hematopoietic stem cell transplantation (HSCT) face complex challenges and need appropriate information to help them cope with the physical and psychological demands of their treatment and experience greater health related quality of life (HRQoL). This study investigated the impact of a specially designed booklet about HSCT, on patients’ satisfaction from information, overall emotional distress and HRQoL. Method and Material: A total of 127 HSCT patients were randomly assigned to receive standard verbal information (control group, n=63) or the additional printed information (intervention group, n=64). Patients’ satisfaction was assessed at two time-points; at admission to the transplant unit and at discharge. Emotional distress and HRQoL were also evaluated at 3 and 6 months post-HSCT. Intention-to-treat analysis was performed. Results: Patients’ characteristics were similar in the two arms. The experimental group reported highest levels of satisfaction when compared with patients attending standard verbal approach (p<0.004). No significant differences between groups were noted, regarding patients’ desired attitude about the amount of perceived information. Overall, 65% of patients wanted all the available information. Most participants considered that the booklet was easy to read and helpful in recalling medical instructions. High levels of satisfaction were strongly correlated with reduction in anxiety levels and improvement in overall HRQoL, at discharge from the transplant unit. Conclusion: Our results demonstrate printed materials can be a beneficial and practical method for patients to gain comprehensible information for HSCT. However, further well-designed, longitudinal multicenter randomized trials are needed to confirm our findings.

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