Thanks to everyone who has completed this so far! Closing date is Weds 3rd August.
For anyone with Polycythaemia vera (PV), ET or MF: Please take this two-minute survey and help us make a crucial decision about our printed booklet for people with MPNs. Thank you!
Blood Cancer UK MPN information survey (alchemer.com)
Update - Results!
Thank you to everyone who took part in our survey about how to provide printed information on MPNs: as one booklet covering Polycythaemia vera (PV), ET and MF, as two booklets (one about Polycythaemia vera (PV) and ET and one about MF) or as three booklets, one for each condition.
The results were:
3 booklets: 52%
2 booklets: 13%
1 booklet: 35%
So, the majority of people are in favour of separate booklets about each condition. The main reason given was that reading information about a single condition is less scary and confusing. This chimes with previous research that found people often feel overwhelmed by the amount of information they are given, particularly at the point of diagnosis.
However, a high proportion of respondents felt it was better to combine the information in one or two booklets, because MPNs are closely linked and it is good to have some knowledge of the other conditions. This is especially true for people who have features of more than one MPN.
To respond to these findings and balance the different views, we have decided:
- We will produce separate booklets about Polycythaemia vera (PV), ET and MF.
- We will make sure we include information in each booklet about overlap conditions and the relationship between Polycythaemia vera (PV), ET and MF.
- We will clearly signpost to the booklets on other MPNs, with details of how to order them for free.
Health Information Team email@example.com