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The Impact of Myeloproliferative Neoplasms (MPNs) on Patient Quality of Life and Productivity: Results From the International MPN LANDMARK Survey
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The MPN Landmark Survey, is a large-scale analysis of patients with myeloproliferative neoplasms (MPNs). The survey assessed patient perception of their overall disease burden, quality of life, activities of daily living, and work productivity. A total of 813 patients in the US diagnosed with myelofibrosis (MF), polycythemia vera (PV), or essential thrombocythemia (ET) completed the survey (207 with MF; 380 with PV; and 226 with ET). Respondents answered questions and some information was calculated from their medical records. The information collected was analyzed to provide general insights on the impact that an MPN disease has on patients.

This transcript is software driven, please understand there may be errors.  Should any inaccuracies or omissions be found, please notify transcripts@MedEdOTG.com for correction.

Hello. My name is Claire Harrison. I'm a hematologist from London, UK. I'm going to share with you a highlight of a presentation from the ASH meeting on a LANDMARK survey that was done, assessing the impact of myeloproliferative neoplasms upon patient quality of life and productivity. 

The aim of this study was to assess the impact for a patient of having an MPN both on symptom burden, but also their daily functionality and work productivity in a fairly global cohort of patients. As you can see on this slide, the countries that were mainly involved in this survey are colored in red. Predominantly, patients came from northern Europe, Japan, Canada, and Australia. Overall, almost 700 eligible patients completed the survey, 174 of them with myelofibrosis. The larger groups of patients were those with polycythemia vera and essential thrombocythemia. 

You can see the baseline disease characteristics of these patients. Many of them were giving us data from within their first six months of diagnosis, and they also reported their prognostic risk scores. You can see this information is more fully reported for patients with myelofibrosis, with around 50% of patients with ET and PV, interesting, reporting that they didn't know what their risk score was. More patients with either myelofibrosis or polycythemia vera have experienced symptoms within two years of diagnosis. 

Here you can see a breakdown of the symptoms that were reported to have been experienced by the patients within the last 12 months according to the disease type. Not surprisingly, this data shows what we've already learned in the field, that fatigue or tiredness is a very prevalent symptom for patients, affecting almost two-thirds of patients with ET here and just around 50% of patients with polycythemia vera or myelofibrosis. The spectrum of symptoms, as reported in this survey, is pretty much as we have come to expect with these diseases. Importantly, almost 90% of patients who took part in this survey have indeed experienced some symptoms within the past year.

Turning now to symptom severity, patients were asked to report severity of their symptom on a scale of 0 to 10. What we're seeing here is the patients who were reporting symptoms with a score of at least 6 on the severity scale. Here, again, you can see that a predominant feature is inactivity, fatigue, and how this ties in with depression, sad mood, unintentional weight loss, for example. You can see there's quite a significant number of patients here reporting quite a high severity score for symptoms. 

The survey also went on to not only look at the prevalence and severity of symptoms, but also asking patients please to identify which symptom they would most like to have resolved. Importantly, many patients referred to an improvement in fatigue or tiredness as a priority for them, but also rather high numbers of patients also wanting to address issues with blood clots, bone pain, itching, headaches, etc.  So, important for us to focus on all of these facets of disease. Interestingly, we also saw an increase in severity as well as number of symptoms since the time of diagnosis. 

On this slide, you can see how the responses were when the patients were asked a question relating to how the symptoms reduced their quality of life and whether they agreed or disagreed with the statement, "MPN symptoms reduce my life quality." Here you can see that globally over 70% of patients across all of these diseases either somewhat or strongly agreed that symptoms reduce their quality of life, with overall around 25% of patients or fewer disagreeing or strongly disagreeing. 

In this survey we also extended our knowledge with regard to the impact of having an MPN upon the ability of patients to work. In the lower half of the slide you can see the results from the question, "As a result of your condition, have you ever ...?" You can see, for example, that overall patients are reporting a relatively high impact on their ability to work, with almost 10% of patients voluntarily leaving their job, taking early retirement, started receiving disability living allowance, or moving to lower-paid jobs. So, this really gives us another view on another dimension of the impact of having an MPN. 

In conclusion, the findings from this international MPN LANDMARK survey really show us a picture of patients' symptom type and severity, which is very similar to the data that we have already got available to us, showing us that the global patient experience of having these conditions is actually very similar. But we've also had in this survey an additional window upon the impact of the patients' global quality of life, and their activities of daily living, and importantly, their ability to work, with a high level of impact upon the patients being able to hold down a full-time job, holding down a job at the same level of pay, or needing help with their income, such as disability living allowance. This is important data that we need to take into account when we consider benefits of treatment, for example, and treatment targets for the future. Thank you for listening to this presentation today.