Data_Sheet_1_“A second birthday”? Experiences of persons with multiple sclerosis treated with autologous hematopoietic stem cell transplantation—a qualitative interview study.docx

Introduction and objectiveAutologous hematopoietic stem cell transplantation (aHSCT) is a promising treatment option for persons with multiple sclerosis (pwMS). Patients undergoing aHSCT face unique challenges in all aspects of life. In this study, we explored the lived experiences of pwMS undergoing aHSCT.
MethodsSemi-structured interviews of 12 pwMS treated with aHSCT were conducted using a maximum variation sampling strategy. Interviews were transcribed verbatim and analyzed thematically using inductive and deductive categories.
ResultsThree major themes were identified: (1) preparing for aHSCT, (2) experiencing the procedure, and (3) post-treatment time. A difficult decision-making process, organizational effort, and funding difficulties characterized the preparation for transplantation. AHSCT was seen as a life-changing event accompanied by both psychological and physical stress, with an associated feeling of regaining control. The transplantation had a lasting positive effect on the lives of the interviewed pwMS. However, the early post-treatment time was characterized by successes and failures alike. Particularly the independently organized medical aftercare was perceived as challenging. Retrospective revaluation has led most pwMS to wish for earlier information provision about the treatment option of aHSCT during their treatment history.
ConclusionAHSCT had a clear impact on patients’ physical and psycho-social health, influencing their perception of life and its quality. Assessing and attending to unmet needs of patients before, during, and after transplantation may positively influence their experience of aHSCT.

研究背景与目的：自体造血干细胞移植（autologous hematopoietic stem cell transplantation, aHSCT）是多发性硬化患者（persons with multiple sclerosis, pwMS）颇具前景的治疗选择。接受aHSCT治疗的患者在生活的各个维度均面临独特挑战。本研究旨在探究接受aHSCT治疗的多发性硬化患者的亲身生活体验。
研究方法：本研究采用最大变异抽样策略，对12名接受aHSCT治疗的多发性硬化患者开展半结构化访谈。访谈内容逐字转录后，结合归纳与演绎范畴进行主题分析。
研究结果：本研究共识别出三大核心主题：（1）aHSCT术前准备；（2）治疗过程中的体验；（3）术后阶段。移植准备阶段的典型特征包括艰难的决策过程、繁杂的组织协调工作以及资金筹措困境。受访对象将aHSCT视为改变人生的重大事件，期间伴随心理与生理双重压力，但同时也萌生了重新掌控生活的感受。移植对受访患者的生活产生了持久的积极影响。然而术后早期阶段兼具成败得失，其中自主统筹的术后医疗随访尤其被认为颇具挑战。经过回顾性反思，多数患者表示希望在既往治疗历程中，能够更早获取关于aHSCT治疗方案的相关信息。
研究结论：aHSCT对患者的生理及社会心理健康均产生了显著影响，进而改变了他们对生活及其质量的认知。评估并满足患者在移植前、移植期间及移植后未被满足的需求，或可积极改善其接受aHSCT治疗的整体体验。