Patients, Doctors Need Better Communication And Understanding Of Rare Blood Cancer, Survey Says

A survey conducted by The Leukemia & Lymphoma Society (LLS) and Novartis found the majority of patients with a rare blood cancer called Chronic Myeloid Leukemia (CML) and physicians have a reasonable understanding of the best way to manage and monitor this disease. However, polymerase chain reaction (PCR) testing, which provides a precise assessment of response to treatment, doesn’t take place as often as current guidelines recommend.

The survey, which was administered to hematologists and oncologists, as well as CML patients, found while patients and physicians are aware of the importance of PCR testing, one in three patients are unsure why regular testing is necessary. Additionally, although 100 percent of physicians agreed PCR testing is an ideal test in CML management, 35 percent indicated they only test their patients once every six months or less often, well under recommended guidelines. Of these physicians, 60 percent said the infrequency is either because guidelines are unclear or because they believe testing one to two times per year is sufficient to monitor their patients.[1] Similar findings have been reported in past research, including a 2014 survey of more than 5,000 CML patients, which was presented at a major medical meeting and concluded 44 percent of patients received only one PCR test a year.[2]

CML is a relatively slow-growing cancer of the blood and bone marrow.[3] Most patients are diagnosed with CML when symptoms are mild or unnoticeable.[4] The PCR test is a very sensitive blood test which can be used to detect and measure cancer cells in patients with CML. The most sensitive PCR tests can detect as few as a single cancer cell in 1,000,000 cells.[5]

“Current guidelines recommend CML patients receive a PCR test every three months, which allows physicians to follow response and potentially intervene early if changes occur,” states Jerald Radich, M.D., Clinical Research Division, Fred Hutchinson Cancer Research Center. “If a patient is not on track with their treatment milestones, it’s important to discuss why and work together to determine an action plan.”

Key insights from patients and physicians [1]:

  • Almost 80% of patients said they have worked with their doctor to switch treatments based on PCR results.
  • 89% of patients said PCR results indicated whether they are on track to reach goals.
  • Nearly one in three patients were unaware of why testing is necessary and how often it should be performed.
  • 73% of patients said they proactively ask about PCR testing, however only 18.5% of physicians said patients asked about PCR testing.
  • 100% of physicians agreed PCR testing is an important component of CML management, however 35% of physicians test their patients once every six months or less often.

“The Leukemia & Lymphoma Society is proud to offer extensive resources to help improve communication between CML patients, their loved ones and physicians,” states Louis J. DeGennaro, Ph.D., president and chief executive officer, LLS. “Knowing and understanding a patient’s response to treatment is necessary in order to achieve the best possible outcome with CML.”

Frequent communication is essential to effectively manage CML. For a patient or caregiver, it is important to discuss PCR testing with a doctor. Here are some tips for those important conversations:

  • Write down questions about PCR testing and bring those to the next doctor’s appointment.
  • Establish treatment goals with your doctor. If you are not reaching these goals, let the doctor know.
  • Create a journal detailing progress and share it with the doctor.
  • Set calendar reminders for when tests should occur.
  • Ask questions when you don’t understand something and keep communication ongoing.

To learn more about CML, speak with your physician. You can also visit the CML section of the LLS website or call the LLS Information Resource Center at (800) 955-4572.

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[1] CML Molecular Testing Survey. GFK Roper (2014). Sponsored by Novartis Oncology.

[2] Smyth C, et al. BCR-ABL Testing Frequency Lower Than NCCN Recommendations in Lab Network Review of CML Patients (Abstract 73205). https://ash.confex.com/ash/2014/webprogram/Paper73205.html. Accessed April 2015.

[3] National Cancer Institute. General Information About Chronic Myelogenous Leukemia (PDQ). http://www.cancer.gov/cancertopics/pdq/treatment/CML/patient. Accessed March 2015.

[4] Leukemia & Lymphoma Society. CML Stages. http://www.lls.org/diseaseinformation/leukemia/chronicmyeloidleukemia/cmlphases/. Accessed March 2015.

[5] National CML Society: Monitoring and Tests. http://www.nationalcmlsociety.org/living-cml/monitoring-tests. Accessed March 2015.


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