European WM Patient Forum - attendee survey

This year’s event was put together with help from feedback. At previous events like this, we ask for attendees’ opinions, and this in turn has helped us choose this year’s programme and manage accessibility to the event.

By giving us feedback this year, you’ll help us make next year’s event even better. The survey will only take a few minutes to complete.

Thank you.

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* 1. Which location did you attend this year's forum?

Amsterdam

WMUK

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* 2. Are you attending the Forum as a

Someone living with WM

Family member of someone living with WM

Friend of someone living with WM

Healthcare professional

Other (please specify)

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* 3. Is this your first time attending an event organised by either the IWMF or WMUK?

No, I have attended in person or virtual events organised individually by both charities

No, I have attended in person or virtual events organised by WMUK

No, I attended in person or virtual events organised by IWMF

Yes, I have not attended in person or virtual events organised by either charity

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* 4. How did you hear about the Forum?

Through IWMF's emails

Through WMUK's emails

On IWMF social media

On WMUK social media

From my local patient organisation/IWMF affiliate

On a forum

From a family member of friend (word of mouth)

From a healthcare professional

Other (please specify)

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* 5. How would you describe your experience of the event? Check all that apply

I did not get a chance to meet or talk to other attendees in any meaningful way

I shared experiences with other people in a similar situation

I was able to ask healthcare professionals questions or learnt valuable information from them

I have made plans to meet or chat to people I’ve met outside of the event

I have joined a support group

I have made contact with a regional patient organisation

Other (please specify)

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* 6. Please rank your overall experience of the Summit.

	N/A	Poor	Neutral	Good	Excellent
Ease of registration	Ease of registration N/A	Ease of registration Poor	Ease of registration Neutral	Ease of registration Good	Ease of registration Excellent
Venue (please answer for the venue you attended)	Venue (please answer for the venue you attended) N/A	Venue (please answer for the venue you attended) Poor	Venue (please answer for the venue you attended) Neutral	Venue (please answer for the venue you attended) Good	Venue (please answer for the venue you attended) Excellent
Speakers	Speakers N/A	Speakers Poor	Speakers Neutral	Speakers Good	Speakers Excellent
Session content	Session content N/A	Session content Poor	Session content Neutral	Session content Good	Session content Excellent
Communications pre-event	Communications pre-event N/A	Communications pre-event Poor	Communications pre-event Neutral	Communications pre-event Good	Communications pre-event Excellent
Clinician 1-2-1s (Birmingham only)	Clinician 1-2-1s (Birmingham only) N/A	Clinician 1-2-1s (Birmingham only) Poor	Clinician 1-2-1s (Birmingham only) Neutral	Clinician 1-2-1s (Birmingham only) Good	Clinician 1-2-1s (Birmingham only) Excellent
Event polling and questions (sli.do)	Event polling and questions (sli.do) N/A	Event polling and questions (sli.do) Poor	Event polling and questions (sli.do) Neutral	Event polling and questions (sli.do) Good	Event polling and questions (sli.do) Excellent
Live stream from other venue	Live stream from other venue N/A	Live stream from other venue Poor	Live stream from other venue Neutral	Live stream from other venue Good	Live stream from other venue Excellent

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* 7. What was your experience of venue (please answer for the venue you attended)?

	N/A	Poor	Neutral	Good	Excellent
Accessibility	Accessibility N/A	Accessibility Poor	Accessibility Neutral	Accessibility Good	Accessibility Excellent
Easy to travel to	Easy to travel to N/A	Easy to travel to Poor	Easy to travel to Neutral	Easy to travel to Good	Easy to travel to Excellent
Parking	Parking N/A	Parking Poor	Parking Neutral	Parking Good	Parking Excellent
Food	Food N/A	Food Poor	Food Neutral	Food Good	Food Excellent
Atmosphere	Atmosphere N/A	Atmosphere Poor	Atmosphere Neutral	Atmosphere Good	Atmosphere Excellent

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* 8. Do you feel your understanding of the topics discussed at the meeting has improved?

Yes

In part

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* 9. How did you feel at the end of the event? Check all that apply

More knowledgeable about WM in general

Better able to have informed conversation with my healthcare professional team

Empowered to take a more active part in my care

Less isolated

I have practical tips that will help me to live well with WM

Positive about the future

None of the above

Other (please specify)

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* 10. What was your overall experience of the individual speakers and sessions?

	Did not attend	Poor	Neutral	Good	Excellent
Morning walk/yoga (Amsterdam only)	Morning walk/yoga (Amsterdam only) Did not attend	Morning walk/yoga (Amsterdam only) Poor	Morning walk/yoga (Amsterdam only) Neutral	Morning walk/yoga (Amsterdam only) Good	Morning walk/yoga (Amsterdam only) Excellent
Speed-dating (Amsterdam only)	Speed-dating (Amsterdam only) Did not attend	Speed-dating (Amsterdam only) Poor	Speed-dating (Amsterdam only) Neutral	Speed-dating (Amsterdam only) Good	Speed-dating (Amsterdam only) Excellent
Poster session (Amsterdam only)	Poster session (Amsterdam only) Did not attend	Poster session (Amsterdam only) Poor	Poster session (Amsterdam only) Neutral	Poster session (Amsterdam only) Good	Poster session (Amsterdam only) Excellent
Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way?	Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way? Did not attend	Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way? Poor	Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way? Neutral	Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way? Good	Dr Josephine Vos - WM in the body: what is it, how does it develop and why do I feel this way? Excellent
Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way?	Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way? Did not attend	Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way? Poor	Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way? Neutral	Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way? Good	Dr Dima El-Sharkawi - WM in the body: what is it, how does it develop and why do I feel this way? Excellent
Dr Marie Kersten - Living with WM - summary presentation	Dr Marie Kersten - Living with WM - summary presentation Did not attend	Dr Marie Kersten - Living with WM - summary presentation Poor	Dr Marie Kersten - Living with WM - summary presentation Neutral	Dr Marie Kersten - Living with WM - summary presentation Good	Dr Marie Kersten - Living with WM - summary presentation Excellent
Dr Shirley D'Sa - Living with WM - summary presentation	Dr Shirley D'Sa - Living with WM - summary presentation Did not attend	Dr Shirley D'Sa - Living with WM - summary presentation Poor	Dr Shirley D'Sa - Living with WM - summary presentation Neutral	Dr Shirley D'Sa - Living with WM - summary presentation Good	Dr Shirley D'Sa - Living with WM - summary presentation Excellent
Prof Christian Buske - Current WM treatment landscape (Amsterdam only)	Prof Christian Buske - Current WM treatment landscape (Amsterdam only) Did not attend	Prof Christian Buske - Current WM treatment landscape (Amsterdam only) Poor	Prof Christian Buske - Current WM treatment landscape (Amsterdam only) Neutral	Prof Christian Buske - Current WM treatment landscape (Amsterdam only) Good	Prof Christian Buske - Current WM treatment landscape (Amsterdam only) Excellent
Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only)	Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Did not attend	Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Poor	Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Neutral	Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Good	Will Franks - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Excellent
Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only)	Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Did not attend	Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Poor	Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Neutral	Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Good	Sandra Holstead - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Excellent
Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only)	Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Did not attend	Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Poor	Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Neutral	Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Good	Charlotte Bloodworth - What are my symptoms and how do I manage them - panel discussion (Birmingham only) Excellent
Pro Monique Minnema - Approaching clinical trials - what to consider?	Pro Monique Minnema - Approaching clinical trials - what to consider? Did not attend	Pro Monique Minnema - Approaching clinical trials - what to consider? Poor	Pro Monique Minnema - Approaching clinical trials - what to consider? Neutral	Pro Monique Minnema - Approaching clinical trials - what to consider? Good	Pro Monique Minnema - Approaching clinical trials - what to consider? Excellent
Harriet Scorer - Approaching clinical trials - what to consider?	Harriet Scorer - Approaching clinical trials - what to consider? Did not attend	Harriet Scorer - Approaching clinical trials - what to consider? Poor	Harriet Scorer - Approaching clinical trials - what to consider? Neutral	Harriet Scorer - Approaching clinical trials - what to consider? Good	Harriet Scorer - Approaching clinical trials - what to consider? Excellent
Dr Simone Ferrero - What's new in WM? (Amsterdam only)	Dr Simone Ferrero - What's new in WM? (Amsterdam only) Did not attend	Dr Simone Ferrero - What's new in WM? (Amsterdam only) Poor	Dr Simone Ferrero - What's new in WM? (Amsterdam only) Neutral	Dr Simone Ferrero - What's new in WM? (Amsterdam only) Good	Dr Simone Ferrero - What's new in WM? (Amsterdam only) Excellent
Vern Middleton - Fatigue	Vern Middleton - Fatigue Did not attend	Vern Middleton - Fatigue Poor	Vern Middleton - Fatigue Neutral	Vern Middleton - Fatigue Good	Vern Middleton - Fatigue Excellent
Isabella Jones - Fatigue	Isabella Jones - Fatigue Did not attend	Isabella Jones - Fatigue Poor	Isabella Jones - Fatigue Neutral	Isabella Jones - Fatigue Good	Isabella Jones - Fatigue Excellent
Dr Sarah Dwinger - Mental Health and Active Monitoring	Dr Sarah Dwinger - Mental Health and Active Monitoring Did not attend	Dr Sarah Dwinger - Mental Health and Active Monitoring Poor	Dr Sarah Dwinger - Mental Health and Active Monitoring Neutral	Dr Sarah Dwinger - Mental Health and Active Monitoring Good	Dr Sarah Dwinger - Mental Health and Active Monitoring Excellent
Dr Catherine Oglivie - Mental Health and Active Monitoring	Dr Catherine Oglivie - Mental Health and Active Monitoring Did not attend	Dr Catherine Oglivie - Mental Health and Active Monitoring Poor	Dr Catherine Oglivie - Mental Health and Active Monitoring Neutral	Dr Catherine Oglivie - Mental Health and Active Monitoring Good	Dr Catherine Oglivie - Mental Health and Active Monitoring Excellent
As the healthcare professional - panel	As the healthcare professional - panel Did not attend	As the healthcare professional - panel Poor	As the healthcare professional - panel Neutral	As the healthcare professional - panel Good	As the healthcare professional - panel Excellent
Joy Ellery - Get involved in research - putting patients first (Birmingham only)	Joy Ellery - Get involved in research - putting patients first (Birmingham only) Did not attend	Joy Ellery - Get involved in research - putting patients first (Birmingham only) Poor	Joy Ellery - Get involved in research - putting patients first (Birmingham only) Neutral	Joy Ellery - Get involved in research - putting patients first (Birmingham only) Good	Joy Ellery - Get involved in research - putting patients first (Birmingham only) Excellent
Orlando Agrippa - Get involved in research - putting patients first (Birmingham only)	Orlando Agrippa - Get involved in research - putting patients first (Birmingham only) Did not attend	Orlando Agrippa - Get involved in research - putting patients first (Birmingham only) Poor	Orlando Agrippa - Get involved in research - putting patients first (Birmingham only) Neutral	Orlando Agrippa - Get involved in research - putting patients first (Birmingham only) Good	Orlando Agrippa - Get involved in research - putting patients first (Birmingham only) Excellent
Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only)	Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only) Did not attend	Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only) Poor	Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only) Neutral	Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only) Good	Jonathan Moshinsky - Get involved in research - putting patients first (Birmingham only) Excellent

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* 11. Are there any subjects you would like us to cover in the future?

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* 12. Do you have any specific feedback for any of the speakers?

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* 13. If you required language support, do you have any feedback for how translations were handled?

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* 14. Do you have any further comments for the event organisers to help us provide meaningful events for the WM community in the future?

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* 15. We'd love to keep in touch by sharing our latest news and WMUK and IWMF's work including research updates, on-line events, fundraising and other opportunities to get involved.

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