Inaugural ‘Blood Cancer In America’ Survey Finds Patients Maintain Positive Views of Condition Being ‘Under Control’
—Newly launched Blood-Cancer.com addresses the needs, concerns of people living with all forms of blood cancer—
PHILADELPHIA – June 13, 2018 – Despite the physical, emotional and social challenges faced, three-fifths of people living with blood cancer feel that their condition is under control with current treatment plans, according to Blood Cancer In America 2018, a national survey by Health Union, LLC of people diagnosed with the condition and caregivers.
The survey supports the launch of Blood-Cancer.com, Health Union’s 18th chronic condition-specific online community. The community provides information, connection and validation to patients and caregivers impacted by every form of blood cancer, including multiple myeloma, lymphoma and leukemia.
Of all of the blood cancers, people with lymphoma held the most positive views of their treatment plans, with 69 percent citing their symptoms as being under control, followed by 60 percent of those with leukemia and 56 percent with multiple myeloma. Some sub-groups – specifically three-quarters of patients with acute myeloid leukemia – were even more positive about their conditions being under control. However, those with less common blood cancers, such as myelodysplastic syndromes, were less likely to feel that their conditions are under control.
Despite the overall positive view of treatment plans, respondents still expressed some frustrations with their care, including lack of conversations pertaining to available treatment options and potential side effects. These conversations can have a measurable impact on patients given that the two main factors noted for influencing treatment decisions are effectiveness (64 percent) and potential side effects (38 percent).
“As a patient living with non-Hodgkin follicular lymphoma, I’ve learned the importance of being a self-advocate and clearly asking the oncologist specifics about both the disease itself and available treatment options,” said Blood-Cancer.com patient advocate Carole McCue. “To make an informed decision, a patient needs to know about the success rate and possible side effects of the proposed treatment.”
With respect to types of treatment, three-fifths of respondents reported using more than two, with chemotherapy being reported as the most used treatment for all types of blood cancer, according to 69 percent of patients and 80 percent of caregivers. Chemotherapy is followed by steroid therapy and stem cell transplant for people with multiple myeloma; steroids and radiation therapy for lymphoma; and transfusion therapy and steroids for leukemia. For those with less common blood cancers, transfusion and watchful waiting are next.
Across all blood cancer types, fatigue is the most common treatment side effect as experienced by approximately three-quarters of all patients. Other common side effects include osteoporosis, which is experienced by 63 percent of multiple myeloma patients and 46 percent of lymphoma patients, and heart problems, which are experienced by 55 percent of lymphoma patients and half of those with leukemia.
“Although every form of blood cancer has its own unique set of needs, there are also a lot of striking similarities – like treatments and side effects – as reinforced by Health Union’s inaugural Blood Cancer In America data,” said Tim Armand, Health Union president and co-founder. “By bringing together people who are impacted by these different forms of blood cancer, Blood-Cancer.com aims to give people even more opportunities to learn, share experiences, and connect with others about all aspects of life with blood cancer.”
Blood Cancer In America surveyed 2,596 U.S. respondents – including 1,976 patients and 620 caregivers – from Nov. 10, 2017 to March 2, 2018. A summary infographic of the results is available on Blood-Cancer.com; additional survey results may be available upon request.
About Health Union, LLC
Health Union integrates the power of human connection and technology, uniting people in the shared experiences of life with chronic health conditions. The company creates condition-specific online ecosystems – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 18 online health communities, including Blood-Cancer.com, MultipleSclerosis.net, LungCancer.net and Type2Diabetes.com.