Only 19% to 26% of patients with chronic myeloid leukemia (CML) discuss treatment decisions with their physician, a survey by Swiss-based pharmaceutical Novartis has revealed.

The Survey of Unmet Needs in CML (CML SUN), which investigated how patients and physicians felt about current treatment options, joint decision-making, and treatment satisfaction, also found that 39% to 43% of patients only received information about one treatment from their physician, according to reports from patients.

“CML SUN was designed to address critical unanswered questions amongst people living with chronic myeloid leukemia and physicians, such as approach to treatment options, differences in efficacy and tolerability priorities, as well as effectiveness around communicating goals to one another,” said Fabian Lang, CML SUN Steering Committee member, study author, MD, Goethe University Hospital, Frankfurt, Germany.

The study disclosed that treatment goals for patients and physicians differed; patients focused on halting disease progression and improving their quality of life, while physicians placed greater emphasis on the efficacy of the treatment administered.

Current treatments affect quality of life, patients report

Although patients and doctors have agreed that treatment efficacy is up to the mark, patients have addressed issues like coping with side effects, having to deal with physical and emotional fatigue, stress about treatment effectiveness, difficulty in exercising and maintaining social lives – factors that have led to a decline in their quality of life.

Moreover, 48% to 66% of physicians reported that they presented only one treatment option to patients, and nearly half of them claimed that they received little to no input from their patients regarding treatment decisions across lines of therapy.

Lang said: “As CML has, in many ways, become a chronic disease thanks to available treatments, it’s important to understand patient and physician priorities, especially as they change across lines of therapy. These CML SUN insights will help us continue to evolve how CML is managed.”

Lisa Machado, CML SUN Steering Committee member, founder of the Canadian CML Network and executive producer of Healthing.ca., said: “People living with chronic myeloid leukemia must be able to have open and honest conversations with their doctors about their treatment goals, how medication side effects impact their lives, as well as their emotional and mental well-being.”

“We have come a long way in terms of how we treat CML, with innovative therapies making it possible for people to live longer and better lives with this disease. But there’s still more work to be done, especially when it comes to ensuring the relationships between doctors and patients are based on shared decision-making, a clear understanding of quality of life needs and expectations for the future.”

The data for the study has been gathered from Australia, Brazil, Canada, France, Germany, Italy, Japan, South Korea, Spain, U.K., and U.S. Later this year, final analyses of the survey will be presented.

Current treatments for chronic myeloid leukemia

CML is a type of blood cancer where stem cells produce too many white blood cells (WBCs) due to a genetic mutation – often characterized by the presence of an abnormal chromosome known as the Philadelphia chromosome in blood cells – in the bone marrow. It is estimated that 8,930 people will be diagnosed with CML in 2023, in the U.S. alone, according to the American Cancer Society.

Presently, targeted cancer drugs like tyrosine kinase inhibitors (TKIs) are prescribed, as they inhibit tyrosine kinase, an enzyme that aids the uncontrolled growth of underdeveloped WBCs in CML.

Other treatment options include chemotherapy as well as stem cell transplants.

Novartis’ mission to tackle chronic myeloid leukemia

Expanding treatment options, Novartis developed Scemblix, the first-ever CML therapy that acts as a STAMP (specifically targeting the ABL myristoyl pocket) inhibitor, which suppresses the activity of the enzyme BCR-ABL1 kinase, a kind of tyrosine kinase.

Scemblix was approved by the U.S. Food and Drug Administration (FDA) in 2021 and by the European Commission in August 2022, for the treatment of adult patients with Philadelphia chromosome-positive CML.