An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL)

Introduction: It has long been recognized that expert care can improve outcomes for CLL patients (pts). Moreover, CLL treatment has rapidly changed over the past several years, making it challenging for healthcare providers (HCP) to keep pace with new therapies. Many pts do not have access to CLL experts due to geography, insurance, or cost. Telemedicine can provide HIPAA-compliant access to experts. The nonprofit CLL Society, working with 10 CLL experts and using a platform from an online 2^nd opinion service (InfiniteMD), coordinated 105 telemedicine consults in 2017-19 as part of a free Expert Access Program (EAP). Here we report the impact of this service on a nationwide underserved CLL population.

Methods: The EAP application was available online at CLLSociety.org with links on CLL forums and in weekly alerts sent to >5000 pts. It was promoted at CLL Society patient educational forums and 28 support groups. To qualify for EAP, participants needed to be US residents who had a CLL diagnosis but weren't seeing an expert physician (defined as a nationally recognized CLL research physician who primarily cares for CLL pts). Pts meeting inclusion criteria were asked to complete a pre-consult survey and had their electronic records synopsized for review by the consulting expert. Pts then participated in a 30-minute online HIPAA-compliant video consult with the CLL expert. Following the consult, pts received a summary to share with their local HCP and were asked to complete a (post-) survey. Data were analyzed using descriptive statistics and Clopper-Pearson confidence intervals.

Results: The pre-consult survey was filled out by 116 pts (age range [median] = 28 to 88 [62], 53% male), of whom 105 had the EAP consult and 84 finished the post- survey. Several post-survey questions asked pts if they had a greater understanding of their CLL after the online consult compared to before. EAP had the following impact on the 84 pts completing the post-survey: 64% became more confident in their current HCP, 82% had a better understanding of their CLL diagnosis and treatment/management plan, 85% had improved confidence in this plan, and 86% were more confident in understanding their prognostic test results. Only 25% of these 84 pts did not plan to make any changes regarding their disease. The breakdown of intended future actions (pts could select >1 answer) according to the post- survey was as follows:

• 55% would consider a clinical trial

• 42% planned to do more research about CLL

• 35% planned to have more tests done

• 24% planned to see a new doctor

• 20% planned to pursue additional genetic testing

• 8% planned to pursue a different treatment

• 4% planned to delay treatment

Additionally, 92% of these pts learned something new from their EAP physician, 42% learned about a prognostic test they previously had not undergone, and 31% believed their diagnosis and/or CLL stage should be re-evaluated. Only 2% of the 84 pts who completed the post-survey did not find the online consult easy, due to hearing trouble or video issues. In fact, 95% affirmed that the convenience of the online platform was important in their decision to participate in EAP. All but 6% had confidence in and trusted the expert and 83% felt a greater peace of mind after their encounter. Every patient but 1 said they would recommend EAP.

Limitations: Twenty percent of the 105 pts who had a consult did not complete the post-survey, raising the possibility of reporting bias if those who failed to follow-up did so because of a negative experience. Differences in the exact wording between the 2 surveys prevented a pre-vs. post-statistical analysis. However, post-survey questions asking about relative confidence or understanding (using the words "better" or "more") elicited information on the impact of EAP.

Conclusions: Access to CLL experts through EAP provides useful medical information. While confidence in a patient's current HCP improved because of the consult, 75% (95% CI: 64% - 84%) planned to make some type of change regarding their CLL management. Thus, an online consult with an expert may benefit pts by both increasing their confidence in their local HCP and in their knowledge of CLL, while motivating them to act. More research is needed to study longer term effects of the EAP.