Collaboration to ease clinical trial search process for patients with blood cancers
Patients with cancer often feel overwhelmed by the reality of their disease and may struggle simply to maintain the course of treatment set forth by their oncologist. The additional effort required to seek out appropriate clinical trials, determine their eligibility and travel to trial sites may be more than their limited schedules, finances and emotional reserves permit.
These issues and more may account for the fact that only about 5% of adults with cancer enroll in clinical trials.
“There are multiple reasons why it may be difficult for patients to participate in clinical trials, including education and awareness of clinical trials, access to trials and financial issues,” Gwen L. Nichols, MD, chief medical officer for the Leukemia & Lymphoma Society, said in an interview with Healio. “The Leukemia & Lymphoma’s Clinical Trial Support Center exists to educate patients about clinical trials, identify those that might be right for them and provide this information to their health providers.”
In a joint effort with ASH, the Leukemia & Lymphoma Society (LLS) is expanding access to the free service, which offers clinical trials navigation and support for patients with blood cancers and their families.
This collaborative effort streamlines the clinical trial search process by allowing the referring hematologist to provide essential clinical information about the patient directly to LLS nurse navigators, who can then customize their search for the most appropriate trials for that patient.
Nichols spoke with Healio about how the Clinical Trial Support Center (CTSC) operates and how she hopes it will increase clinical trial awareness and participation among patients with cancer.
Question: Can you elaborate on the obstacles to clinical trials that patients with cancer face?
Answer: Patients and providers may think that clinical trials are solely a last resort when all other options have failed, rather than seeing these trials as a way to get new and better medicines when standard of care may not be optimal. Finding information about clinical trials and eligibility criteria can be complex and cumbersome, and trials may not be available locally. In terms of finances, patients may have concerns about insurance coverage, travel and other costs, and physicians may have concerns that they will lose their patient.
Q: How is the clinical trial service being expanded?
A: Aside from doubling the size of CTSC’s team of nurse navigators, who are registered nurses with expertise in blood cancers, LLS has joined forces with ASH to bring this service directly to providers. The collaboration means that physician offices can be directly involved in finding clinical trials for their patients, without online searches and calls if a trial is not available at the provider’s institution. We see this as a “physician extender,” allowing physicians time to discuss the available options with their patients rather than spending their time hunting down trial options. It often takes up to 20 calls to ascertain if a trial is open and accruing, and if the patient is a suitable candidate. We can take that off the physician’s plate, leaving the decision on which trial is right to the patient and provider.
Q: Nurse navigators have become increasingly important in providing access to cancer care. How is the role of nurse navigators being increased through this expansion?
A: Through this collaboration, the referring hematologist provides key clinical details about the patient directly to LLS nurse navigators. This information, along with discussions with the patient, will allow the nurse navigator to identify clinical trials that are best suited to the patient based on the specifics of their disease, prior treatments, biomarkers and other pertinent eligibility details. Our nurse navigators can also speak with the patients about their concerns regarding trials, finances, travel and home support, making participation more likely if the physician finds an appropriate trial.
Q: How does the service provide support to the families of patients with cancer?
A: Nurse navigators work one-on-one with patients to identify clinical trials that might be right for them based on their diagnosis. They also collect information regarding a patient’s overall health status, ability to travel for treatment, insurance restrictions, support systems and other unique factors. Once a clinical trial has been identified, nurse navigators help with the enrollment process and partner with LLS’s information resource center to provide support and information to patients, families and caregivers throughout the trial and beyond.
Q: How will access to the CTSC benefit ASH member physicians?
A: ASH members will be able to access LLS’s free CTSC service through a dedicated portal. The ability of referring hematologists to upload critical details about their patient’s case will make the clinical trial search process more targeted and efficient. Physicians will have access to the same information provided to their patients by the nurse navigator, streamlining communication and relieving the patient of the responsibility of updating their provider with information, such as clinical trials that have been identified. – by Jennifer Byrne
For more information:
Gwen L. Nichols, MD, can be reached at 161 Fort Washington Ave., New York. NY 10032.
Disclosures: Nichols reports support for this project from Amgen, Foundation Medicine Inc., Genentech, Janssen Biotech and Pharmacyclics.