Patients understanding of the potential side effects, effectiveness - PowerPoint PPT Presentation

Patient’s understanding of the potential side effects, effectiveness and required safety monitoring of their current disease modifying therapy Julie Taylor, Chisha Weerasinghe, Tom Button York Teaching Hospitals NHS Trust

Method • Scripted phone call to all patients who have had Alemtuzumab within the past 3 years

Questionnaire 1) How happy are you with your understanding of potential side effects of Alemtuzumab on a scale of 1-10 ? ( with 10 being very happy and 1 being not happy) 2) What sources would you use if you wanted to get more information about your disease modifying therapy ? 3) What potential side effects of Alemtuzumab do you recall ? • Record answer and Prompt following • 3a) At the time of infusion ? • 3b) Long term potential side effects or risks

Questionnaire 4) What safety monitoring do you require when on this treatment ? 5) What potential complications are we monitoring for ? 6) How effective do you feel Alemtuzumab is on a scale of 1-10 ( 10 being the most effective) ? 7) How risky do you feel Alemtuzumab is on a scale of 1-10 ( 10 being the most risky/ life threatening ) ?

Results patient happiness on understanding potential side effects understanding pre understanding post 10 10 10 10 10 10 10 9 9 9 9 9 8 7 5 5 1 2 3 4 5 6 7 8

Sources of information percentage of patients who mentioned the following as sources of information percentage 62.5 50 50 37.5 25 25 12.5 12.5 12.5 MS Soc forums MS nurse MS trust lit given other pt Cons GP websites

Patient perception of side effects during infusion patient number Side effects during infusion 1 increased heart rate, rash, dizzy 2 rash, increased heart rate and temperature rash, increased heart rate and blood 3 pressure Anaphylaxis, changes in blood pressure and 4 temperature 5 thyroid, herpes, kidney and liver problems 6 rash, flushing, infection Side effects of steroids, anaphylaxis, 7 changes in BP and temp 8 rash

Awareness of long-term complications of Alemtuzumab Awareness of long-term complications of Alemtuzumab percentage 100 50 37.5 37.5 25 12.5 thyroid ITP kidney cancer infection other

Patient perception of effectiveness and risk patient perception of effectiveness and risk of Alemtuzumab treatment how effective risk 10 9 8 7 7 6 6 5 5 5 5 4 3 0 0 0 1 2 3 4 5 6 7 8

Conclusion and how it will influence practice • Source • Side effects • Monitoring • Perception of risk and effectiveness

Practice points • Other patient’s opinions and personal experience seem to have more influence than previously thought. May be even more influential than a health professional’s opinion. • “ auto immune conditions” could be quite vague for the patient. Specific examples may be useful. • Perception of risk is individual and would be useful to check patient’s perception at the time of consenting

Questions ?.... • Thank you