Survivors’ knowledge of their diagnosis, treatment and possible late adverse effects after autologous stem cell transplantation for lymphoma

<b>Purpose:</b> Lymphoma survivors after high dose therapy with autologous stem cell therapy (HD-ASCT) are at high risk for late adverse effects (AEs). Information patients receive and collect throughout their cancer trajectory about diagnosis, treatment schedule and risks of AEs may influence attitudes and health-related behavior in the years after treatment. The purpose of this study was to explore level of knowledge in lymphoma survivors after HD-ASCT at a median of 12 years after primary diagnosis. <b>Material and methods:</b> From a national study on the effects of HD-ASCT for lymphomas, 269 survivors met for an outpatient examination, including a structured interview addressing knowledge about diagnosis and treatment. Survivors were also asked whether they knew and/or had experienced certain common late AEs. Numbers of recognized and experienced late AEs were presented as sum scores. Factors associated with the level of knowledge of late AEs were analyzed by linear regression analysis. <b>Results:</b> Eighty-one percent of the survivors knew their diagnosis, 99% knew the components of HD-ASCT and 97% correctly recalled having had radiotherapy. Ninety percent reported awareness of late AEs, but the level of knowledge and personal experience with specified AEs varied. Thirty-five percent of survivors stated to have received follow-up for late AEs. In multivariable analysis younger age at diagnosis, having received mediastinal radiotherapy, higher mental health related quality of life, a higher number of self-experienced late AEs and having received follow-up care for late AEs were significantly associated with a higher level of knowledge of AEs. <b>Conclusion:</b> The majority of lymphoma survivors treated with HD-ASCT correctly recalled diagnosis and treatment, while knowledge of late AEs varied. Our findings point to information deficits in survivors at older age and with lower mental health related quality of life. They indicate benefit of follow-up to enhance education on late AEs in lymphoma survivors.

**研究目的**：接受大剂量治疗联合自体干细胞移植（HD-ASCT）后的淋巴瘤幸存者，罹患晚期不良反应（adverse effects, AEs）的风险显著升高。患者在整个癌症诊疗历程中所获取的关于诊断、治疗方案及不良反应风险的相关信息，可能会对治疗后多年的健康相关态度与行为产生影响。本研究旨在探讨原发性诊断中位随访12年后，HD-ASCT后淋巴瘤幸存者的知识掌握水平。
**材料与方法**：本研究源自一项针对淋巴瘤HD-ASCT治疗效果的全国性研究，共有269名幸存者接受了门诊检查，检查内容包含一项针对诊断与治疗相关知识的结构化访谈。研究者同时询问幸存者是否知晓或曾经历过若干常见晚期不良反应。将识别出的不良反应与亲身经历的不良反应数量以总分形式呈现。采用线性回归分析，对与晚期不良反应知识掌握水平相关的影响因素进行探究。
**研究结果**：81%的幸存者能够明确知晓自身的癌症诊断结果，99%的受访者清楚HD-ASCT的治疗组成，97%的患者可正确回忆起曾接受过放疗。90%的参与者表示知晓晚期不良反应，但针对特定不良反应的知识掌握程度与个人经历存在较大差异。仅35%的幸存者表示曾接受过晚期不良反应相关随访。多变量分析结果显示，诊断时年龄较小、曾接受纵隔放疗、心理健康相关生活质量更高、自述经历的晚期不良反应数量更多，以及曾接受晚期不良反应随访护理的患者，其不良反应相关知识掌握水平显著更高。
**研究结论**：多数接受HD-ASCT治疗的淋巴瘤幸存者能够正确回忆起自身的诊断与治疗方案，但对于晚期不良反应的知识掌握程度参差不齐。本研究结果提示，高龄及心理健康相关生活质量较低的幸存者存在信息认知缺口。研究同时表明，为淋巴瘤幸存者开展晚期不良反应相关健康教育的随访干预，有助于提升其相关知识储备水平。