A Face Behind the Numbers: A Patient’s Perspective on the First-ever International MPN LANDMARK Survey
Dec 05, 2016
By Tina F.
Tina lives near Florence, Italy. She was diagnosed with myelofibrosis in 2007 at the age of 43.
On the outside, I look like a healthy, happy individual. But what is hidden under the surface is my challenge living with myelofibrosis (MF), one of a group of incurable, rare blood cancers called myeloproliferative neoplasms or “MPNs.” MPNs, which also include polycythemia vera (PV) and essential thrombocythemia (ET), are life-threatening cancers that are characterized by a disruption in normal blood cell production and regulation, which can lead to a variety of burdensome symptoms such as fatigue, night sweats, bone/joint pain and more. If these symptoms are not adequately monitored and treated, patients with an MPN may experience a significantly higher disease burden and, in MF and PV, the diseases can progress rapidly, eventually becoming fatal.
Living with a life-threatening blood cancer such as an MPN can take a toll on patients, their quality of life as well as their loved ones, but often to different degrees and in different ways. To better understand the challenges patients with an MPN have to face, and how they can improve dialogues with their healthcare professionals to improve management of their diseases, I became a patient representative on the steering committee for the first-ever international MPN LANDMARK Survey conducted by Novartis*. The survey included nearly 700 patients across six countries and four continents. Participants were asked questions about emotional well-being, quality of life, activities of daily living and work productivity.
This survey was particularly important to me since I know firsthand how difficult it can be to convey what I’m going through to others. During the first few months after my diagnosis I felt scared and alone – I had never heard of MPNs, and my initial research made me feel worried and confused. Like me, approximately one-third of patients in the study reported feeling anxious or worried about their disease, unsure of what radical life changes the future may hold.
In addition to the emotional impact of an MPN diagnosis, many also notice changes to their habits and routines. According to the survey, patients noted a 35% impairment on their capacity to work, with employed patients often having to miss workdays due to a problem related to their disease. Further, patients reported that their disease negatively impacted their ability to complete daily activities by 40%. Although to a lesser extent than many of my fellow patients, I too notice the limitations that my disease creates on a day-to-day basis; the blood thinner medication I take to manage and prevent blood clots, one of the possible complications of MF, occasionally limits my daily activities and I have to plan my calendar around blood work appointments and frequent checkups with my hematologist.
What has helped me cope with living with an MPN has been adding a positive focus to the disease and finding ways to educate myself so I am better prepared to explain and speak to others about what I am going through. My hope is that this survey better explains the emotional and physical burden of living with an MPN so newly diagnosed patients feel less alone, physicians can better tailor treatments to help optimize the patient’s quality of daily life and loved ones will better understand what life is like with these life-threatening diseases.
*The results of the international MPN Landmark Survey were presented for the first time at the 58th American Society of Hematology (ASH) Annual Meeting (Abstract #4267, 12/5/16 6:00 PM PDT)