Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents: An Internet-Based Survey of 281 Patients with CLL

Introduction:The CLL Society, a patient-driven, physician-curated nonprofit organization focusing on the unmet needs of the CLL community, sought to explore how patients (pts) make decisions about their CLL treatment (tx) as little is known about factors that influence pts decision making in the modern era. We focused on three areas of interest: 1) clinical factors that drive decision-making in tx selection; 2) where pts gather information to inform their decisions and 3) the role of the patient versus physician in making tx decisions. To achieve this goal, we conducted a web-based survey.

Methods: We conducted an online survey between Mar-Apr 2016 of CLL pts registered to receive the CLL Society online quarterly newsletter The CLL Tribune as well as those registered with the online CLL specific patient forums hosted by ACOR (Association of Cancer Online Resources) and groups.IO. Data were analyzed using descriptive methods.

Results: 281 US patients completed the survey.The average age was 64 (range 38-84), 46% were male. Additionally 37% were considering front-line therapy and 32% considering tx options in the relapse setting. 40% of pts defined their disease as high-risk (del 17p, p53 mut, del 11q or IGHV unmutated) and 13% were not aware of risk status. The three most important criteria to pts in selecting a tx option included: progression free survival (67%), overall survival (66%) and response rate (62%). Immediate adverse events (AEs) were important to only 35% while long-term AEs influenced 50% in their tx decisions. Cost (30%), location of tx administration (19%) and participation in a clinical trial (20%) were of lowest importance to pts. 96% of pts would be willing to take a continuous therapy if it offered long-term control without the possibility of cure. Only 37% would be willing to take a tx that included chemotherapy if it offered a chance of cure with higher risks of death and serious life threatening complications. Similarly, 42% would be willing to consider "CAR-T" or "bone marrow transplant" if it offered a chance of cure with higher risks of death and serious life threatening complications. Websites focused on CLL (87%), healthcare providers (74%), and online blogs by physicians (72%) were the three most common educational sources for information on CLL. Only 14% let the treating physician primarily make the tx decision without patient input. 95% stated their own involvement in the tx decision: 84% depended on a CLL expert and 49%, a local hematologist.

Summary: These data provide important insight as to what drives patient CLL tx decision making in the era of modern therapies. While the data is reflective of the pts who use the Internet or of those who have family members helping them use the Internet, it does suggest that pts are increasingly engaging in their tx decisions and relying on multiple sources of information beyond their physician. Moreover, there seems to be broad acceptance of long-term non-curative tx and significant hesitancy for chemotherapy, CAR-T therapy and stem cell transplantation (even if cure is possible when risks are perceived as high). Providers need to engage in shared decision-making with pts. The survey was only available online, hence the results are influenced by the self-selection by those who use the Internet and access the sources mentioned above.