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Multiple Sclerosis patient Experience Survey on the switch from 'originator Natalizumab' (Tysabri IV) to 'biosimilar Natalizumab' (Tyruko).

Thank you for taking the time to participate in this survey regarding your experience of transitioning from 'originator Natalizumab' (Tysabri IV) to 'biosimilar Natalizumab' (Tyruko).

The purpose of this survey is to better understand your experience of the transition, including any impact it may have had on you and your Multiple Sclerosis.

We are also seeking to understand your experience of any information or discussions you may have had about 'biosimilar Natalizumab', including any involvement you may have had in decisions about your treatment, as well as the level of support you felt you received during this period.

This includes understanding whether, and in what way, you recall being involved in providing consent or agreement to the change in treatment.

Your responses will contribute to a clearer understanding of patient perspectives and experiences of switching to a biosimilar treatment within NHS services.

Please answer the following questions as honestly and fully as possible 
1.
How long has it been since you were diagnosed?
*
2.
Where are/were you being treated for your MS?
3.
How long had you been receiving originator Natalizumab before the switch?
*
4.
How would you describe your experience on originator Natalizumab? In your own words.
5.
What notice period were you given before switching to biosimilar Natalizumab?
6.
How was the switch communicated to you?
Neurologist consultation
MS nurse
Letter
At infusion appointment
Other
7.
Do you believe you had enough information needed to be able to make an informed decision?
That you fully understood what a biosimilar was.
Yes
No
Unsure
*
8.
Before beginning biosimilar Natalizumab, do you feel any questions or concerns about the medication being a 'bio-similar' were fully answered and understood?
Yes
No
Eventually
9.
Did you feel you had a genuine choice to remain on originator Natalizumab?
Yes
No. I was told switching was mandatory
*
10.
After switching to biosimilar Natalizumab, how were you monitored, and did this differ to when you were on originator Natalizumab (eg. blood tests, MRI scans, reviews with your MS team)?[Checkboxes]
None
Not sure
Blood tests
MRI scans
Reviews with MS team
Other:
11.
If yes, what type of additional monitoring did you receive? (Select all that apply)[Checkboxes]
  • Extra tests or scans beyond routine care.
  • Additional appointments or check-ins.
  • Monitoring through a separate program or registry.
    • Other (please specify)
    12.
    How many biosimilar Natalizumab infusions have/did you received?
    *
    13.

    Have you experienced new or worsened symptoms after switching to biosimilar Natalizumab?


    Yes
    No
    14.
    If yes, which symptoms have you experienced? (tick all that apply)[Checkboxes]
    Reactivation of previously dormant MS symptoms
    Increased fatigue
    Headaches
    Cognitive issues
    Mobility issues
    Increase in pain
    Relapse
    Psychological / emotional impact
    An event of unconsciousness
    Allergic reaction 
    N/A. I have experienced no change in symptoms
    Other
    15.
    Did you report these symptoms to your healthcare team
    Yes
    No
    16.
    If yes, did you have to report them more than once?
    No
    2–3 times
    4 times
    5+
    17.
    Were your concerns acknowledged?
    No
    Not initially, but I was eventually listened to
    Yes
    Unsure
    18.
    If you reported worsening of symptoms, how were your concerns addressed by your healthcare team?
    I was supported, I felt taken seriously and my concerns were investigated.
    Neutral. I felt acknowledged, but no action was taken.
    I felt 'gaslit', dismissed, or told my symptoms were just a normal part of the MS journey.
    I'm still waiting for a response.
    N/A. I did not report symptoms.
    Other
    19.
    Since switching to biosimilar Natalizumab, have you been told that your Multiple Sclerosis has now progressed/worsened?
    No, I am stable and at the same baseline as before.
    Possibly, but awaiting medical confirmation from my doctor.
    Yes (please tell us what your doctor has told you your MS stage has changed to):
    20.
    If you answered 'Yes' to the above question, do you think this is accurate, or do you think is could be deterioration due to the switch to biosimilar Natalizumab?
    Yes - I believe this is part of my MS journey.
    No - I think this is deterioration due to the switch to the biosimilar. Natalizumab
    Unsure.
    21.
    Has the switch affected your quality of life?
    No - There hasn't been a change to my quality of life
    Yes - My quality of life is slightly worse
    Yes - My quality of life is significantly worse
    I actualImproved
    22.
    Tick all of the boxes which you feel have been impacted with any deterioration experienced:[Checkboxes]
    N/A
    I have needed to take time off work.
    I have had to leave employment.
    I have had to adapt my duties at work.
    I need additional care (eg. At home/personal care/help around the house)
    I am unable to fully participate in family life. Care for my children as much as  I used to.
    I have had to spend more time at medical appointments/I have been hospitalised
    I can no longer enjoy my hobbies
    I can no longer exercise/I have had to decrease the type of exercise I take part in.
    Other
    *
    23.
    Please describe your experience on biosimilar Natalizumab, in your own words (optional)
    24.
    Have you reached out to any of the following regarding any issues you have had with biosimilar Natalizumab?
    [Checkboxes]
    Patient and Liaison Service (PALS)
    NHS complants team
    Solicitor
    Local MP
    MS support charities
    Online support groups or forums
    Other
    I have not reached out to anyone.
    25.
    Are you currently back on originator Natalizumab, or were you put onto a different drug?
    I am still on biosimilar Natalizumab
    Originator Natalizumab
    Natalizumab subcutaneous
    Unmedicated
    Awaiting clinical advice for alternative therapy
    Different drug therapy altogether (Please write the name of the new therapy you are on if known)
    *
    26.
    Did you have the originator Natalizumab treatment reinstated, but have since been taken off it again? eg; JCV+ or progressed.
    I have remained back on originator Natalizumab.
    I have since been taken off it.
    Hospital has told me I will need to switch to a different drug in the near future.
    *
    27.
    Have you had, or did you have, originator Natalizumab treatment reinstated? If yes, how did it happen?
    Healthcare team advocated for me
    I advocated for myself
    PALS
    Other. Please provide details
    N/A
    28.
    If a decision was made to get you back on originator Natalizumab, how long did it take?
    My next infusion
    2-3 months
    3-6 months
    6 months +
    I am still waiting to have my first infusion after the switch back to Tysabri
    29.
    How long have you been, or were you, back on originator Natalizumab? How many infusions have/had you received?
    0-1
    2-3
    4-5
    6-7
    8-9
    10+
    *
    30.
    Would you say that your fight to reinstate originator Natalizumab has affected you physically/mentally?
    Significant impact
    Moderate impact
    Minimal impact
    No impact at all
    31.
    If you are/were back on originator Natalizumab, how would you describe your symptoms now?
    Still as bad as I was on biosimilar Natalizumab.
    Gradually improving
    Marked improvement
    Huge improvement. I am back to the level I was at, pre- biosimilar Natalizumab
    I haven't recovered to the same baseline as before
    *
    32.
    Do you know your EDSS scores before and after the switch to biosimilar Natalizumab?[Checkboxes]
    Before biosimilar Natalizumab
    After biosimilar Natalizumab
    Don't know
    *
    33.
    Were your symptoms reported to the UK medicines safety reporting system (e.g. Yellow Card)?
    Yes
    No
    I was not told about this system
    *
    34.

    Would you consent to your anonymised responses being shared with legal representatives reviewing the case?

    Yes
    No
    *
    35.

    Would you be interested in participating in a collective legal case and/or investigation regarding the switch to biosimilar Natalizumab?

    Yes
    No
    Maybe
    36.
    If yes, are you happy for your details to be shared with a solicitor who is looking at our case? If so, please send your details
    Name:
    Name:
    Contact number:
    Contact number:
    Email address:
    Email address:
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