Relapsing-remitting multiple sclerosis patients' experience with natalizumab: a phenomenological investigation.
This phenomenological investigation was undertaken to gain a better understanding of multiple sclerosis (MS) patients' experience with natalizumab (Tysabri; Biogen Idec Inc, Cambridge, MA) treatment and its impact on their quality of life (QOL). Twenty MS patients who were receiving natalizumab treatment were recruited by the physicians, nurse practitioners, nurses, and social worker of the William C. Baird Multiple Sclerosis Center in Buffalo, New York, between March 2009 and November 2009. Patients were invited to participate if they had relapsing-remitting MS, had received at least six treatments of natalizumab, and could articulate their experience. An interviewer obtained informed consent, gathered basic demographic information, and then tape-recorded the participants' accounts of their experience with natalizumab. The audio-recorded interviews were transcribed and de-identified before being submitted to the investigators for analysis. The Atlas.ti qualitative data analysis program (Scolari, Berlin, Germany) was used to manage the data. Patients found natalizumab easy to tolerate and effective; moreover, they described improvement in their QOL. Patients must weigh the benefits of control of their MS against the increased risk of developing progressive multifocal leukoencephalopathy with natalizumab treatment. Information from this study will be used to educate professionals involved in MS patient care as well as patients and families considering treatment with natalizumab.
William C. Baird Multiple Sclerosis Research Center, The Jacobs Neurological Institute (CEM, MK); and the School of Nursing (MAJ), University at Buffalo, State University of New York, Buffalo, NY, USA. Ms. Miller is now with Genzyme Corporation/MS Division, Cambridge, MA, USA.
Colleen E
CE
Miller
William C. Baird Multiple Sclerosis Research Center, The Jacobs Neurological Institute (CEM, MK); and the School of Nursing (MAJ), University at Buffalo, State University of New York, Buffalo, NY, USA. Ms. Miller is now with Genzyme Corporation/MS Division, Cambridge, MA, USA.
Mary
M
Karpinski
William C. Baird Multiple Sclerosis Research Center, The Jacobs Neurological Institute (CEM, MK); and the School of Nursing (MAJ), University at Buffalo, State University of New York, Buffalo, NY, USA. Ms. Miller is now with Genzyme Corporation/MS Division, Cambridge, MA, USA.
Mary Ann
MA
Jezewski