Patient’s understanding of the potential side effects, effectiveness and required safety monitoring of their current disease modifying therapy

MS Specialists MasterClass 6, 2019

Introduction

The available treatment options for patients with relapsing remitting multiple sclerosis has increased exponentially over the years. The treatments are more complex with some potentially serious side effects. Similarly the sources of information available to the patient has increased dramatically. This audit was designed to get an insight into a patient’s understanding of potential side effects, effectiveness, risks and safety monitoring involved.

Methods

All patients who had been administered Alemtuzumab over the last 3 years were included in the audit. Of the 10 eligible patients 2 patient were unavailable. Data was collected through a scripted phone call.

Results

Patient’s satisfaction pre and post phone call was quite consistent. Most patients felt they had a good understanding of their DMT.

The two most popular sources for patients (62.5%) was internet based, and the third most popular source was the MS nurse (50%) with Consultant and GP with only 12.5%.

Regarding long term side effects all patients identified thyroid disease but less than a third mentioned ITP and kidney disease.

Regarding effectiveness three patients felt they would need at least an year before knowing whether the medication was effective but perception of how riskly the medication was variable (4-8) with 10 being life threatening. None of the patients felt that the complications of Alemtuzumab could be life threatening.

Conclusions

Overall patients felt satisfied with their level of understanding. There were some inconsistencies in their understanding of long-term side effects. The most popular sources were internet based. This could be due to easy accessibility. Perception of risk seemed quite variable with none thinking that complications of Alemtuzumab could be life threatening.