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Experiences of being treated with autologous haematopoietic stem cell transplantation for aggressive multiple sclerosis: A qualitative interview study
Department of Medical Sciences, Neurology, Uppsala University, Uppsala (SWE); Department of Neurology, Uppsala University Hospital, Uppsala (SWE).ORCID iD: 0000-0002-0580-8821
Department of Biomedical and Clinical Sciences (BKV), Faculty of Medicine and Health Sciences, Linköping University, Linköping (SWE); Department of Neurology, Linköping University Hospital, Region Östergötland, Linköping (SWE).
Department of Medical Sciences, Neurology, Uppsala University, Uppsala (SWE); Department of Neurology, Uppsala University Hospital, Uppsala (SWE).
Department of Medical Sciences, Neurology, Uppsala University, Uppsala (SWE); Department of Neurology, Uppsala University Hospital, Uppsala (SWE).
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2024 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 19, no 2, p. e0297573-e0297573Article in journal (Refereed) Published
Abstract [en]

Background

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.

Methods and findings

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.

Conclusions

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.

Place, publisher, year, edition, pages
2024. Vol. 19, no 2, p. e0297573-e0297573
Keywords [en]
experiences, autologous haematopoietic stem cell transplantation, multiple sclerosis
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-21242DOI: 10.1371/journal.pone.0297573PubMedID: 38324607OAI: oai:DiVA.org:hv-21242DiVA, id: diva2:1837217
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CC BY 4.0

Available from: 2024-02-13 Created: 2024-02-13 Last updated: 2024-02-13

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Flensner, Gullvi

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