CLL-Specific Society Fills Unmet Need

“Smart patients get smart care,” and now those with chronic lymphocytic leukemia (CLL) have a patient—centric, physician–curated organization to help provide support and education surrounding their disease.

The CLL Society is a nonprofit organization that serves the CLL community by offering a platform for patients and caregivers to receive education and support, as well as information on cutting-edge research and treatment options.

“The CLL Society is a non-profit that is dedicated to the unmet needs of the CLL community,” CLL Society founder Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, said in an interview with CURE. “We pride ourselves on taking very complicated information, and breaking it down to try to make it accessible for patients so they can see where future treatment is going.”

With more than 3,000 patients in their registry, the CLL Society is the only multi-purpose, US-based nonprofit specific to the CLL community. On its web site, www.CLLSociety.org, the organization offers patients a background on basic terms; how to get started with a new diagnosis; information on prognostics, early care and overall treatment; and general CLL facts. In addition, the CLL Society gives patients background on facts beyond CLL diagnosis, how to live with the disease, the latest research from clinical trials and updates that come out of oncology conferences.

The organization provides support groups for patients, including peer-to-peer exchanges. Starting with only a few in the beginning of 2017, the organization now has 24 support groups available for patients.

“[We are] providing information, training and the latest news and research so that the patients who attend this can learn from one another. That is going on across the country in an amazing way,” said Koffman, who is also a well-known physician, educator and clinical professor-turned-patient.

The society also conducted 12 disease-specific patient and caregiver educational forums in 2017. The first half of these forums involve key experts from the top centers across the country, designed to update patients on research and clinical trials in the CLL scape. The second half includes a patient testimonial. For example, a forum at the Cleveland Clinic gave one patient the platform to discuss his involvement in a clinical trial, the importance of support groups and how patients can be their own advocates.

To help patients who are unable to see CLL experts for their cancer care, the society also provides patients with Health Insurance Portability and Accountability Act (HIPPA)-compliant access to top CLL experts to give them information they can then take to their community doctors.

“There is clear evidence that seeing a CLL expert improves overall survival, even in older data it is more than a two-year survival advantage, but not everyone has that option,” Koffman said.

On the other side of things, the CLL Society is helping physicians and nurses to educate patients with CLL. “Doctors and nurses are very pushed for time in terms of education, and want to do more to educate their patients. But often it is difficult with the demands that are on them and the patient load that they have,” Koffman said. To do this, the organization provides doctors and nurses with toolkits of pull-out sheets specific to a patient’s current situation regarding treatment, side effects, disease stage, etc.

Lastly, the CLL Society conducts patient research and reports on regulatory news. At the 2016 American Society of Hematology (ASH) Annual Meeting and Exposition, the CLL Society presented an abstract — accepted by ASH as clinically relevant in the CLL section – on what was important to 281 patients in terms of making their clinical decisions.

Since then, the society has expanded these efforts, working with 11 university cancer centers to explore the patient journey from the time of diagnosis to treatment. The survey currently includes 951 patients, but the organizations hopes for 1,000 participants. They will evaluate patient decisions revolving around:

• what it was like for patients when they were diagnosed;
• what it was like when they were told they didn’t need immediate treatment;
• if patients were tested to see what their prognostic situation was, and how that made them feel;
• where patients got their information;
• when it came time for treatment, is patients were retested;
• how patients made their decisions;
• patient adherence; and
• issues like anxiety, depression and fatigue.

Koffman noted these results are expected to be released in 2018. “We want that [information] out so the community hematologists know what is important to their patients and have that patient perspective so that it is not just anecdotal,” he added. “Then the community hematologists have to look at this and see ‘oh patients really want to know this’ or ‘this is really important when they are making a decision.’”

Going along with the CLL Society’s motto — “smart patients get smart care” – Koffman recommends to patients to continually keep themselves informed. “Make yourself smart. On our web site, pick up some of the easy stuff and keep looping around,” he added. “And there are other people who can help, too. We have what you need to help you become a smart patient.”