Patients’ expectations of autologous hematopoietic stem cell transplantation as a treatment for MS

Background: Autologous hematopoietic stem cell transplantation (aHSCT) receives increasing attention as a treatment option for MS. However, as there are no randomized controlled trials comparing aHSCT to best medical treatment as yet, aHSCT is not generally advised and implemented as a treatment option for MS. Neurologists are increasingly faced with patients asking questions regarding aHSCT and seeking commercially offered aHSCT abroad. The aim of this study is to evaluate MS patients’ knowledge and expectations of aHSCT and their actual and desired sources of information. Methods: 137 MS patients visiting the Amsterdam University Medical Center MS clinic, completed a self-developed questionnaire with items on disease history, knowledge about aHSCT, expectations of aHSCT, information sources and the role they assign to their neurologists. Results: Fifty-four percent is considering aHSCT either now or in the future, especially those who are dissatisfied with current treatment, have a shorter disease duration (≤ 10 years) or are more disabled (EDSS > 3.5). Only 25% report to have sufficient knowledge about aHSCT. Patients mainly use potentially unreliable information sources such as the internet and television, although they prefer information from their neurologist. Half of the patients think aHSCT to be superior to highly effective DMT. Expectations of efficacy in patients interested in aHSCT are significantly higher than in patients not wanting to undergo aHSCT. Only about one third of patients are able to mention at least one side effect. Conclusion: Many MS patients are considering aHSCT as a treatment option, although they think that they are not well-informed regarding aHSCT. They prefer their neurologist as a source of information. Therefore, neurologists should pro-actively inform their patients about the potential benefits and risks of aHSCT to enable them to choose the best treatment option.