People living with myeloproliferative neoplasms (MPN) have a notably different patient journey – from diagnosis to treatment to quality of life – from those living with more common and known types of blood cancer, namely leukemia, lymphoma and multiple myeloma. Findings from the third annual Blood Cancer In America survey, a syndicated research study from Health Union, of more than 1,900 people living with blood cancer provide an opportunity to understand those differences and, as a result, fill in the blanks around a rare condition with minimal awareness.

MPN represents a rare form of blood cancer that causes an increase in the number of red or white blood cells, or platelets. In turn, there is an increase in these types of blood cells in the blood and bone marrow, which leads to a host of side effects. The three classic MPN subtypes are essential thrombocythemia, myelofibrosis and polycythemia vera.

Compared to the more common types of blood cancer, MPN is considered rare. Leukemia, for example, averages 14.1 new cases for every 100,000 people annually, while research indicates two out of every 100,000 people each year are diagnosed with MPN. Blood-Cancer.com patient advocate Deb Wesloh wrote in an article that “because it’s so uncommon, there isn’t the hype and media attention that surrounds other cancers.” Making things even more difficult, “you’ll never meet two patients that are the same.”

When compared to the more common forms of blood cancer, respondents living with MPN – 196 completed the survey – appear to have less traditional and, at times, more difficult treatment journeys. Specifically, respondents living with MPN were less likely than those with leukemia, lymphoma or multiple myeloma to say they feel that their condition is under control with their current treatment plan (44% for MPN vs. 58%, 68% and 58% for the other three, respectively).

For people living with MPN, specific treatment plans appear to differ. Many often use similar treatments to those living with the more common blood cancer types, including watchful waiting and chemotherapy. However, people with MPN were also less likely to have ever received radiation therapy, steroid therapy, antibiotic therapy or any surgical treatments. This shows the importance of changing the way pharma marketers communicate to people with MPN about treatment. Additionally, 85% of MPN respondents said they have never been in remission, compared to respondents from the more common blood cancers, who varied from 21 to 47%.

Potentially linked to the differences in treatment journey, among other factors, respondents with MPN seem to have less positive relationships with their healthcare professionals. They were less likely to rank their HCP experiences as positively for a number of factors, including being satisfied overall with the care received from their HCP, being comfortable discussing all aspects of their condition with their HCP and receiving a clear explanation of treatment options from their HCP. Therefore, educating HCPs about special needs and considerations for patients with MPN – specifically hematologist oncologists – could be a useful strategy for pharma marketers.

Potentially due to a smaller population of people with the same condition and less awareness, survey findings suggest that people with MPN rely heavily on online resources to find more information. Specifically, respondents with MPN were more likely than those with more common blood cancer types to say they use internet search, online support groups or patient communities, Facebook, YouTube and mobile apps.

All of this contributes to a more complicated emotional journey. MPN respondents were more likely to say they don’t feel their emotional needs are being met. They were also more likely to say others don’t understand what they’re going through.

Pharma marketers who understand the needs of people living with myeloproliferative neoplasms, as well as fostering open and honest conversations about treatment options, could help to improve the healthcare experiences of people with these conditions.

Engagement on Health Union’s growing portfolio of online health communities, combined with large scale patient-reported data from its syndicated In America surveys, can offer unique insight and understanding into the patient journey that can lead to creating smarter, more effective solutions. Visit our Business Solutions page for more information.