Department of Medical Sciences, Neurology, Uppsala University, Uppsala, Sweden.
Department of Neurology, Uppsala University Hospital, Uppsala, Sweden.
PLoS One. 2024 Feb 7;19(2):e0297573. doi: 10.1371/journal.pone.0297573. eCollection 2024.
Autologous haematopoietic stem cell transplantation (AHSCT) is increasingly used as a treatment for aggressive multiple sclerosis (MS) and has the potential to induce long-term remission and resolution of disease activity. Despite the extensive research on treatment outcome after AHSCT, the experience of living with MS after AHSCT has not been previously described in the scientific literature. The aim of this study was to explore long-term lived experience of people with MS treated with AHSCT.
To exclude selection bias, all persons treated with AHSCT for MS at Uppsala University Hospital, Sweden, between 2004 and 2007 (n = 10), were asked to participate in the study, and all accepted. Open-ended interviews were conducted, digitally recorded, transcribed verbatim, and then subjected to qualitative content analysis with an inductive approach. Five main themes emerged from the interviews: (I) being diagnosed with MS-an unpredictable existence; (II) a new treatment-a possibility for a new life; (III) AHSCT-a transition; (IV) reclaiming life; and (V) a bright future accompanied by insecurity. AHSCT was described by the participants in terms of a second chance and an opportunity for a new life. The treatment became a transition from a state of illness to a state of health, enabling a previous profound uncertainty to wane and normality to be restored. Although participants of different age and sex were included, the main limitation of this study is the relatively small number of participants. Also, the inclusion of persons from one centre alone could restrict transferability of the results.
The results give a first insight into lived experience following a highly effective induction treatment for MS, and the experience of not having MS anymore. Underpinned by previously described outcome following AHSCT, the results of this study challenge the current view on MS as a chronic disease with no possible cure.
自体造血干细胞移植（AHSCT）越来越多地被用作治疗侵袭性多发性硬化症（MS）的方法，并有潜力诱导长期缓解和疾病活动的消退。尽管对 AHSCT 后治疗结果进行了广泛的研究，但在科学文献中尚未描述 AHSCT 后患有 MS 的人的生活体验。本研究旨在探讨接受 AHSCT 治疗的 MS 患者的长期生活体验。
为了排除选择偏倚，要求瑞典乌普萨拉大学医院于 2004 年至 2007 年间接受 AHSCT 治疗的所有 MS 患者（n=10）参与研究，所有人均同意参加。进行了开放式访谈，进行了数字记录，逐字转录，然后采用归纳法进行定性内容分析。访谈中出现了五个主要主题：（I）被诊断出患有 MS-一种不可预测的存在；（II）一种新的治疗方法-新生活的可能性；（III）AHSCT-过渡；（IV）重新获得生活；和（V）光明的未来伴随着不安。AHSCT 被参与者描述为第二次机会和新生活的机会。该治疗成为从疾病状态向健康状态的过渡，使以前的深刻不确定性减弱，恢复了正常状态。尽管纳入了不同年龄和性别的参与者，但本研究的主要局限性是参与者人数相对较少。此外，仅纳入一个中心的人员可能会限制结果的可转移性。
这些结果首次深入了解了 MS 高度有效的诱导治疗后的生活体验以及不再患有 MS 的体验。该研究结果基于先前描述的 AHSCT 后结果，挑战了当前将 MS 视为无法治愈的慢性疾病的观点。
