一种特殊设计的印刷材料对造血干细胞移植患者信息提供满意度和生活质量的影响:一项随机对照试验

Asimina Kiropoulou, Maria Katsareli, Sofia Zyga, Serafeim Nanas, Ioannis Vasileiadis
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摘要

背景:接受造血干细胞移植(HSCT)的血液恶性肿瘤患者面临复杂的挑战,需要适当的信息来帮助他们应对治疗的生理和心理需求,并体验更高的健康相关生活质量(HRQoL)。本研究调查了一本专门设计的关于HSCT的小册子对患者信息满意度、整体情绪困扰和HRQoL的影响。方法与材料:127例HSCT患者随机分为两组,一组接受标准的口头信息(对照组,n=63),另一组接受额外的印刷信息(干预组,n=64)。在两个时间点评估患者满意度;在移植病房入院和出院时。在hsct后3个月和6个月评估情绪困扰和HRQoL。进行意向治疗分析。结果:两组患者特征相似。与接受标准口头治疗的患者相比,实验组报告的满意度最高(p<0.004)。在患者对感知信息的期望态度方面,两组之间没有显著差异。总体而言,65%的患者希望获得所有可用信息。大多数与会者认为小册子易于阅读,有助于回忆医疗说明。从移植病房出院时,高水平的满意度与焦虑水平的降低和总体HRQoL的改善密切相关。结论:我们的研究结果表明,打印材料对于患者获得可理解的HSCT信息是一种有益和实用的方法。然而,需要进一步精心设计的纵向多中心随机试验来证实我们的发现。
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The efficacy of a specifically designed printed material on satisfaction from information provision and Quality of Life of hematopoietic stem cell transplantation patients: A randomized controlled trial
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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