We’re here at the ALL Assembly which is an educational meeting for clinicians from around Europe. It’s really important that patient organisations present the data from the work that they’ve been doing here at these meetings, to talk about some of the issues that affect patients and why that’s important.
I’ve been presenting here at the meeting about ALAN’s Global Quality of Life Patient Survey. That is an international survey looking at what areas of patient-reported experience affect their quality of life. We ran the survey using the HM-PRO which is a new quality of life tool developed by EHA’s Scientific Working Group on Quality of Life and Symptoms. Essentially we asked questions about patient experience and then tested them against the HM-PRO score to say which areas were correlated with a better or worse quality of life.
We’ve presented the findings from this survey at the American Society of Haematology conference last month and we’ll be presenting the final version at the European Haematology Association conference later this year. Essentially what has come out of the interim dataset so far is the hypotheses are confirmed, each of our key areas of patient-reported experience, so things like emotional impact, the wellbeing of patients’ family and friends, the patient ability to perform meaningful activities, the impact of side effects. Each of these areas does impact on quality of life, on their overall quality of life, obviously some are more or less strongly correlated with this, but that has come out of the interim dataset. Also it has come out of it that patients who are on treatment compared to those in remission are more likely to report a negative quality of life. Some of this is not surprising, some of this is not ground breaking, but what it does show us is which areas are the biggest drivers and where patients need more support from their healthcare teams.
One of the findings that comes out of the survey is that gender somewhat has an impact on quality of life. By that I mean HM-PRO breaks down into two separate parts, part A is called Impact and part B is called Signs and Symptoms. There’s a statistically significant difference in the quality of life of females in terms of signs and symptoms and one of the discussions we were having in this workshop was why, what are the reasons that are causing the difference for females compared to men? To my knowledge and to the knowledge of no-one in the workshop there’s any evidence that females are more likely to experience particular side effects but they are more likely to report that these side effects and symptoms are a burden on them.
The key message that would come out of the quality of life survey is how important quality of life is in acute leukaemia. I’ve heard from clinicians that I would describe as fairly patient-centric that it’s all about survival – when you’re talking about a disease that’s as aggressive as acute leukaemia survival is all that matters. That is not the case, quality of life is important to these patients and we’ve picked up a number of areas where quality of life can be improved and better supported by healthcare teams.
The next steps for this survey are that we will be presenting the final data cut at the European Haematology Meeting back in Frankfurt in June. We are currently analysing all of the data and we will be planning to produce a journal article that we’ll be doing later in the year. We’ll also be making all of the data publically available for all stakeholders to use to improve the lives of patients and creating a suite of educational materials for both patients but also for healthcare professionals as how to support the issues patients are experiencing.