Data_Sheet_3_“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.研究背景与研究目的：自体造血干细胞移植（autologous hematopoietic stem cell transplantation，简称aHSCT）是多发性硬化（multiple sclerosis，简称MS）患者的颇具前景的治疗选择之一。接受aHSCT治疗的患者在生活各维度均面临独特挑战，本研究旨在探究此类多发性硬化患者（persons with multiple sclerosis，简称pwMS）接受aHSCT治疗后的真实生活体验。 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pwMS患者开展半结构化访谈。访谈内容逐字转录，并结合归纳与演绎分类法进行主题分析。 研究结果：本研究共提炼出三大核心主题：（1）aHSCT术前准备阶段；（2）治疗过程体验；（3）术后恢复期。移植前准备阶段的典型特征为艰难的决策流程、繁杂的组织协调工作与资金筹措困境。受访患者将aHSCT视为改变人生的重大事件，治疗期间伴随心理与生理双重压力，但同时也重获生活掌控感。移植治疗对受访pwMS患者的生活产生了持久积极影响。然而术后早期阶段成败参半，其中尤以患者自行统筹的术后医疗随访照护最为棘手。经回顾性反思，多数pwMS患者表示，希望在既往诊疗过程中能够更早获知关于aHSCT治疗方案的相关信息。 研究结论：aHSCT对患者的生理与社会心理健康均产生显著影响，进而重塑其对生活及生活质量的认知。在移植前、移植期间及移植后阶段，评估并满足患者未被满足的各类需求，或可改善其接受aHSCT治疗的整体体验。