Patient Anxiety about Contracting PML While Treated with Tysabri

Thursday, May 29, 2014
Trinity Exhibit Hall
Malcolm H Gottesman, MD , Neuroscience, Winthrop University Hospital, Mineola, NY
Patricia A Patrick, DrPH , Health Outcome Research, Winthrop University Hospital, Mineola, NY
Abigail McNall, FNP , Neuroscience, Winthrop University Hospital, Mineola, NY
Sharon Friedman-Urevich, DNP , Neuroscience, Winthrop University Hospital, Mineola, NY
Denise Cheng, RN , Neuroscience, Winthrop University Hospital, Mineola, NY
Eileen Boylan, RN , Neuroscience, Winthrop University Hospital, Mineola, NY


MS Patients treated with Natalizumab experience varying levels of anxiety about contracting PML. 


To determine if patient’s anxiety levels about contracting PML while treated with Natalizumab are related to their objective risk for PML and/or their level of psychosocial support from the infusion group and nursing staff. A possible correlation with demographic and other clinical characteristics was also evaluated.  


75 MS patients treated with Natalizumab at the Winthrop Comprehensive MS Care Center in Mineola, New York, were surveyed in June 2013. Infusions were given in a consistent group setting of 4-6 patients in a dedicated MS care center.

A self administered survey was created by the investigators and distributed to eligible patients. The survey contained questions on demographics (age, gender, ethnicity, insurance), clinical status (year of MS diagnosis, JCV status, prior immunosuppressant treatment, prior infusions) and the use of assistive devices.

Patient characteristics were first summarized by categories of self reported anxiety about PML. (Not at all concerned = LOW, somewhat concerned = MEDIUM, very/extremely concerned =HIGH).

Analysis of the variance and chi-square tests were then conducted to evaluate any potential associations between these characteristics and anxiety level. All analyses were performed using SAS 9.3, results were considered statistically significant at p<.05. 


The average age was 44.5 years. There were 52 females (69%) and 23 males (31%), 59 (78%) Caucasians and 16 (22%) non Caucasians. 21 patients (27%) were JCV IgG positive and 54 (63%) were JCV IgG negative. 54 patients (72%) reported low anxiety and 21 (28%) reported high anxiety about contracting PML. The average of number of infusions was 44.

No relationship was found between risk factors for PML and patient anxiety about contracting PML. The only statistically significant finding was increased anxiety about contacting PML in non Caucasian patients, this was not related to their objective risk factors.


Anxiety about contracting PML in this sample of MS patients treated with Natalizumab is not correlated with objective risk for contracting PML.

The higher anxiety about contracting PML noted in non Caucasian patients may reflect distrust of health care providers with different ethnic/ cultural backgrounds.

Group infusions appear to offer a high degree of psycho-social support regardless of anxiety about PML

This study excluded MS patients who did not elect Natalizumab treatment.  This group may have refused treatment because of concern about developing PML based on objective risk factors. Our conclusions cannot be generalized to patients who refused Natalizumab treatment