Post by MPN-MATE Admin » Sat May 30, 2020 10:24 am
Last Post for today before I go for a very fresh cycle ... 
This Post is about an article that has endeavoured to look at MPNs through the /Lens' of the MPN patient.
Best wishes
Steve
The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View
Authors: Cheryl Petruk . Jonathan Mathias
ABSTRACT
Patients with myeloproliferative neoplasms (MPNs), a group of rare haematological conditions including polycythaemia vera, essential thrombocythaemia, and myelofibrosis, often experience a range of symptoms which can significantly impact their quality of life (QoL).
Although symptom burden is highest in myelofibrosis and high-risk patients, lower-risk patients also report symptoms impacting their daily life and ability to work. In addition to physical symptoms, MPNs affect emotional well-being, with anxiety and depression frequently reported by patients. Despite significant advances in treatment options, such as the introduction of JAK1/JAK2 inhibitors, therapy for MPNs is often palliative; therefore, reduction of symptoms and improvement of QoL should be considered as major treatment goals.
One of the main issues impacting MPN treatment is the discord between patient and physician perceptions of symptom burden, treatment goals, and expectations. New technologies, such as app-based reporting, can aid this communication, but are still not widely implemented.
Additionally, regional variation further affects the psychosocial burden of MPNs on patients and their associates, as treatments and access to clinical trials are options for patients living in some areas, but not others. some of the challenges in patient–physician communication and treatment access are key to improving disease management and QoL, as well as giving the patient greater input in treatment decisions.
PLAIN LANGUAGE SUMMARY
Myeloproliferative neoplasms (MPNs) are a group of blood diseases where the body makes too many blood cells. Patients with MPNs can
have symptoms which interfere with their daily lives, such as tiredness, pain, sweating at night, dizziness, itching, and difficulty sleeping. They also often suffer from anxiety and/or depression.
In nearly all cases, physicians cannot cure the disease, but drugs can prevent blood clots and reduce the speed at which the disease gets
worse. Usually, the main aim of treatment is improving patients’ quality of life (QoL). Targeted drugs, such as ruxolitinib, treat MPNs and reduce symptoms, but do not cure the disease.
Patients frequently want to play a bigger part in decisions about their treatment. However, physicians and patients often have different views on how well treatments are working and what to expect from the treatment. This can mean that patients feel they are not getting the best treatment for their symptoms. Also, patients may not be able to get some treatments or take part in a trial of a new drug, depending on where they live. This creates feelings of unfairness which can affect their mental health. Addressing all these problems may help improve the QoL for patients with these blood diseases.
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