Research Objective:  Patient centered shared decision making for treatment of Multiple Sclerosis, MS, is a dynamic process for this chronic progressive, debilitating, incurable disease.  Engaging patients in decisions to begin, continue, or stop potentially lethal treatments with hope of only reduce disease progression and/or improve quality of life without affecting longevity, epitomizes decisional complexity and uncertainty.  The purpose of this study was to assess patient perceptions and expectations of chemotherapy related to actual clinical changes in their decision process.

Study Design:  A repeated measure pre and post design was used to identify patterns of change in quality of life and symptoms.  Participants were assessed over time at baseline prior to and 3 weeks after infusions, with every 3 month dosage using the Functional Assessment of Multiple Sclerosis and a MS symptom visual analogue scale.

 Population:  Twenty primarily female Caucasian subjects enrolled. The approximate time since diagnosis was from 1 year for the very aggressive form of MS, to over 10 years for secondary progressive. 

Principal findings:  Data for the expectations, perceptions of treatment have indicated perceptions of benefits, side effects, and clinical status changed over time.

Conclusion:  Previous clinical research, from neurological assessment and MRIs, found the drug to be beneficial, but there were no data prior to this study on patient's perceived expectations, benefits, or adverse effects that would contribute to the complex decision of agreeing with recommendations for a high risk treatment with uncertain outcomes either from benefits or side effects.

Implications:  Health care providers need to be consciously aware of patient perceptions and expectations continuously during this on going difficult decision of therapy with uncertain benefits, and uncertain short and long term effects. Patient preferences for adhering to recommended therapy is a shared decision making, dynamic process.