By Catlin Nalley
Since the current chronic lymphocytic leukemia literature (CLL) focuses primarily on the objective aspects of diagnosis, active observation, prognosis and management, a group of researchers sought to gain a better understanding of the subjective experiences of patients. Initial data was recently presented at the 2018 American Society of Clinical Oncology (ASCO) Annual Meeting (Abstract 7532).
Led by the CLL Society Inc., a patient-driven, physician-curated nonprofit organization that focuses on the unmet needs of the CLL community, the team aimed to "understand how CLL and its management, including the health care team, diagnosis, education, active observation, prognostic testing, and the options of clinical trial affect the lives of those with CLL and what was important to patients. The goal was to better understand CLL from the patient's perspective to inform health care providers in best meeting their patients' needs."
With this goal in mind, investigators utilized the 2017 CLL Diagnosis and Treatment Assessment: The Patient View (2017 CLLDATA) survey, which consisted of 64 multi-part questions. The survey was available online or on paper and took place between October and December 2017.
Eligible patients were U.S. residents age 18 years or older who had a diagnosis of CLL/SLL. Participants had to have a working knowledge of English and provide informed consent.
The survey was conducted anonymously and utilized the CLL Society database, Facebook, and online CLL patient forums. Additionally, information cards were distributed in the offices of principal investigators as well as physicians in the community that refer to those investigators.
Researchers analyzed data using descriptive methods. Statistical significance was evaluated using chi-square. According to investigators, analyses and comparisons occurred between multiple subgroups based on age, gender, treatments status, high-risk versus low-risk, and patients treated by a general hematologist/oncologist, CLL expert, or both.
Among the 1,147 useable responses, the median age was 64 years and 46 participants were male. Ninety-six percent were Caucasian. The median time from diagnoses was 5 years and treatment status was as follows: watch and wait (43%); receiving or completed first treatment (25%); and receiving or completed second or later treatment (32%).
Data showed that at the time of diagnosis 48 percent of patients were told they had a "good" cancer by their health care practitioner.
Additionally, 44 percent of participants heard the phrase, "You will die with CLL, not from CLL" and 41 percent were told, "If I had to choose a cancer, this is the one I would want." Patients reported these statements, among others, equally regardless of the type of physician managing their treatment, according to investigators.
Researchers noted that only 13 percent of patients surveyed reported needing treatment within 3 months of diagnosis. Among patients undergoing active observation (87%), 91 percent said that their doctor explained why therapy was not warranted.
The study authors wanted to gain more insight into the emotional response to active observation, according to Betsy Dennison, RN, MS, of the CLL Society. "We wanted to find out more about how [patients] are feeling because they don't see the doctor as often," he noted. "How are they coping with that and what more can we do to support them?"
"When active observation was recommended, patients report anxiety (56%), relief (52%), and confusion (31%). Thirty-four percent and 16 percent of patients report that discussing prognostics increased their anxiety and confusion, respectively," according to study authors.
During active observation, 17 percent of survey respondents reported having no disease-related symptoms. Researchers found that patients reported fatigue (51%), enlarged nodes (47%), anxiety (39%), depression (21%), and night sweats (21%). Among patients undergoing active observation, 653 (66%) utilized herbals and other alternative treatments for CLL management.
The investigators also took a closer look at the patient experience related to clinical trial options. Among patients who were invited to join a clinical trial, but declined cited a number of reasons for their decision, including: preference for a proven treatment (38%), distance from the trial site (29%), fear (20%), and frequent imaging (20%).
Patients who chose to participate in a clinical trial did so because their health care team suggested it as a good option (71%). Other reasons included access to the latest treatments (69%), close monitoring of disease (67%), confidence in the trial team (65%), a desire to help others (56%), and medications provided for free (54%).
"A lot of patients felt very strongly about participating and wanting to feel like they are making a positive effect on society," noted Dennison.
Conclusions, Next Steps
"To our knowledge, this is the largest survey of CLL patients. Much can be learned by detailed surveying of CLL patients throughout their disease," according to researchers. "These include previously unrecognized suboptimal interactions between the CLL patient and the health care provider."
Given that 72 percent of patients reported being offered language similar to "CLL is a good cancer" at the time of diagnoses, investigators recommend that "this might be better replaced with the facts that CLL is a variable disease, with some patients never needing treatment and others experiencing more aggressive disease."
Other recommendations based on these findings include additional support for patients undergoing active observation and access to clinical trials for appropriate patients regardless of where they are being treated.
"Understanding how patients experience their disease is critical to improve communication between patients and their health care providers, which will ultimately advance CLL outcomes," study authors concluded. Additional data from this survey will be reported in the future.
Catlin Nalley is associate editor.