Introduction: The recent expansion of effective treatment options available for patients with chronic lymphocytic leukemia (CLL) has increased the need for patients to be informed and participate in their care. Patients with CLL, provided with reliable information and resources, as part of shared decision making, can collaborate with their healthcare providers (HCPs) to better ensure optimal care that is both effective and matches their treatment preferences.
To help inform patients with CLL, we developed an online treatment decision support tool designed to provide case-specific treatment recommendations from 5 CLL experts. Here we report findings from an analysis of this project along with an associated survey on patient understanding and satisfaction with treatment planning.
Methods: The online tool was developed with input from 5 experts who provided their treatment recommendations on October 2019 for hundreds of different case scenarios in the newly diagnosed and relapsed/refractory CLL settings. These unique case scenarios were defined by patient and disease factors that the experts considered critical to making treatment decisions, including age, fitness, cytogenetic abnormalities, and previous treatment. To use the tool, patients entered their information and, if known, their intended treatment plan based on discussions with their HCPs. After this, expert recommendations for their specific patient scenario were provided, followed by a survey designed to assess patients understanding and satisfaction with their treatment planning.
Results: Between April 2020 and August 2020, 576 unique case scenarios were entered by patients or their caregivers into the tool. Most of the entered cases represented previously untreated patients (77%) followed by second-line cases (19%) and third-line cases (4%). Overall, in the treatment naive CLL setting, 65% of the cases entered were younger (< 65 yrs), fit patients and 20% had a del(17p) or TP53 mutation. Among those who indicated that they had discussed their treatment plan with their provider, there was good agreement between experts and HCP recommendations to patients on the use of a BTK inhibitor in treatment naive CLL with a del(17p) or TP53 mutation (70% vs 66%, respectively). In the absence of a del(17p) or TP53 mutation, there was a greater divergence of treatment recommendations with experts favoring venetoclax + obinutuzumab while HCPs continued to predominantly recommend a BTK inhibitor for these treatment-naive cases.
Among patients who had discussed their treatment with their HCP, 80% indicated that their treatment options were adequately explained and 70% indicated that their goals and preferences were considered during the treatment planning process. Overall, 50% of patients indicated that their HCP recommendations agreed with the expert recommendations provided in the tool. Of those who used this online tool, 87% indicated that they would use this information as part of discussions with their HCP.
Conclusions: This analysis suggests that an online tool designed for patients and their caregivers can provide easy access to CLL treatment recommendations by experts and may help inform patients about alternative treatment options. Moreover, these findings suggest that online tools for patients may improve patient satisfaction in their care by promoting educated discussions with their HCPs. A detailed analysis of the tool, including case entries and management recommendations along with patient satisfaction survey results will be presented.
Koffman:BMY: Speakers Bureau; TGTX: Speakers Bureau; AZN: Speakers Bureau.
Asterisk with author names denotes non-ASH members.