Article Published Offering Patient's Perspective

Congratulations to two of MPNRF’s colleagues from our international network, The MPN Advocates Network, who have recently published an article outlining challenges facing MPN patients! Cheryl Petruk, Executive Director of the Canadian MPN Research Foundation and Jon Mathias of MPN Voice in the UK teamed up to author the article which is available online here and will be in print in an upcoming issue of Springer’s Advances in Therapy*

The article includes an overview of current guidelines for the treatment of MPNs but highlights the incongruity between the patient experience, including breadth and burden of symptoms, and the physician’s perceptions, treatment goals, and expectations. The authors also discuss the effect geographical location has on patients including psychosocial impacts and access to treatments and clinical trials. Finally, the authors posit that better availability of Real World Data (see my recent newsletter article here) such as that collected in myMPN will aid in improving disease management for many patients.

According to Cheryl Petruk, the hope with this publication is to spread the word to the clinical and research communities that there’s more to an MPN patient’s experience than abnormal blood draws and spleen issues. Patients and physicians often have differing views on how well treatments are working with the latter focusing on measurable data like weight, hematocrit, and hemoglobin rather than the quality of life indicators like fatigue, pain, and itching. The 2016 MPN Landmark survey, which was sponsored by Incyte, confirmed the breadth of symptoms experienced by MPN patients. In addition to an effect on the quality of life, patients in many cases reported an impact on their ability to work, and on relationships and family life. Other similar studies found the same and support the premise that addressing disease burden as part of the overall management strategy is crucial to minimize the impact on patients’ daily lives and emotional and physical well-being.

Similarly, the authors highlight that sharing their individual experiences through patient-reported outcome tools such as myMPN or app-based symptom trackers could aid in improving disease management for many patients. As we learned from the Landmark Study, asking patients to share their experience with their MPNs leads to a better understanding of unmet needs. This, in turn, will lead to more meaningful outcome measures in clinical trials and better therapies addressing the broader spectrum of patient symptom burden.

Click here to read the full article

 

 

*Advances in Therapy is an international, peer-reviewed, rapid-publication journal dedicated to the publication of high-quality clinical, observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions across all therapeutic areas.

Author: Lindsey Whyte

Lindsey has assisted several rare and ultra orphan disease groups to create research assets to improve treatment prospects for patients. She came to the MPNRF in 2016 to help launch myMPN, a patient-driven registry.

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