Hello, my name is Anna Fleischer. I'm a clinician scientist at the University Hospital Würzburg and I'm really interested in patient involvement in clinical research. So I'm really happy to be interviewed today. So yesterday I was allowed to give an oral presentation about the importance of treatment for intervals for multiple myeloma patients. So in clinical practice, usually we as doctors are focused more on the therapy itself and treatment side effects than on the breaks between treatments. But as a psycho oncologist, I'm talking to a lot of patients and they often tell me that they're really fed up because multiple myeloma patients have to come to the hospital very often, repeatedly, and they spend so much time at the hospital. And many of them really don't like it because at this time they're away from their family. It's so hard for them to go to birthday parties and to meet all the scheduled appointments they should and also to go on holidays for a few weeks if they have to come to the hospital every few weeks to get some treatment. Then we thought let's make a study and find out if this is a problem of many patients and what we can do about it. So in our study we asked patients with multiple myeloma if treatment-free intervals are very important to them. And actually almost half of multiple myeloma patients answered that they would give long treatment-free intervals at 10 out of 10 on the priority scale. So it's really important for most of the patients. And only the minority said no, they're absolutely not important for me. But on the other hand, we then asked the patients would you accept a higher risk of relapse if you had to trade it off for longer treatment-free intervals? And of course only a very tiny minority, only 7% of patients said yes, I'm so fed up with those short treatment-free intervals that I would actually trade this off. Then in the next step we asked patients how can we make the inpatient stays more comfortable for them? So first we wanted to know which are the barriers? So what's bothersome about coming to the hospital all the time? And patients said yeah, of course the first thing is I'm away from my family, I'm away from my friends, everything I'm missing out at the time. The second thing is I'm constantly reminded of my illness when I have to go to the hospital. I can never relax mentally. Then the third thing they said was the hospital experience is not pleasant of course. They have side effects. They suffer from treatments which are not pleasant to them. Sometimes they experience the communication with the treating physicians not as empathetic. They feel like communication could be improved. Air conditioning at the hospital in summer, like minor things too, or food at the hospital, there are many things which can be improved. I don't know what it's like for you as an audience because different centres probably have different problems. But maybe tiny things can be changed to make the hospital stay more pleasant as a whole experience for patients. But also patients told us that it is reassuring for them to meet their treating physicians regularly. So we might want to find steps to personalise treatment for intervals according to patient wishes. And I think it's important to actually ask patients individually what their preferences are. So we can maybe adjust the timing more to what patients actually want and what might help them to actually feel better. So this is a work in progress. We will do follow-up studies on this to find out if... So now we will think about measures to improve the hospital stay for patients. And then of course we will do further studies to find out if it really helps. And if you have input and if you want to contribute and if you have nice ideas how to improve our and how to conduct the further studies, please join and help because I strongly believe in patient involvement in clinical research. And not only after research has been done, but I think we should start in the beginning. And I think patient perspectives should be included right from the start, already in the design of studies. So I would be really happy about your input because I think the best inspiration comes from the patients. At the moment I'm in the process of writing a book about patient involvement in myeloma research because I think it's important to include the perspectives of myeloma patients right from the start. So if you have something to contribute, if you have any ideas, if you have actionable plans, if you know how to improve the book, please join in. I would be really happy to join forces with you.
HealthTree • January 21, 2025