ASH 2024 | The positive impact of a patient-co-created information resource for young people with MPNs

One of the things we’ve become aware of in working with patients is that patients often feel that they don’t see another patient that looks like them. Many of our patients are on telephone follow-up and were during the pandemic, and those that come into the waiting room often don’t know the person in the waiting room’s got the same condition as them, for example. So we’ve recently set up a young person’s group for patients with MPN. Young means under 40. Well, it still means, sadly, I don’t qualify, but it does mean that many of our patients will qualify. And there are specific things that are of need for that group. So really thinking about what do you tell an employer? How do you cope with a new relationship, for example, when you have this condition, making decisions about buying a house, fertility, pregnancy, et cetera. So first of all, there’s been wide enthusiasm for this group with over 300 members. It’s all run on Facebook. But what we did was, and this work was done by Alice Watson, who leads the patient group and is a patient herself. She’s very, very inspiring. And a colleague physician, Helen Oram, who works at King’s College London, but works with teenagers and young adults, mainly with sickle cell disease, but hopefully we can attract her to do some work in the MPN space too. And what they did was they showed some information that we have available already and then ran a survey past the young people and then did a kind of rapid change and then redress cycle. And so in the end, hopefully we have what will be a bit more bespoke for young people that flags what is needed for them and allows them also to raise awareness of this group and allows them to be a bit more cohesive and for us to hear their voice. What we’re doing next actually is we’re, as well as raising awareness of the young people’s group, colleagues who are listening have got young patients, please direct them to this group. There’s some paperwork available, but we’re also now going to try to write some specific guidelines for young patients with this condition, which hopefully will be helpful.

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