An Innovative Telemedicine Platform to Provide Expert Access to Patients with Chronic Lymphocytic Leukemia (CLL)
Authors: Koffman DR. Brian , Pagel John M. , Kaempf Andy , Park Byung , Avruch Liza , Lee Christopher , Movassaghi Babak , Byrd John C. , Skarbnik Alan , Davids Matthew S. , Danilov Alexey 
Published: November 2019

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 2nd 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 trial42% planned to do more research about CLL35% planned to have more tests done24% planned to see a new doctor20% planned to pursue additional genetic testing8% planned to pursue a different treatment4% 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.

Disclosures
Koffman: abbvie: Equity Ownership; astra zeneca: Equity Ownership, Honoraria; Beigene: Equity Ownership; Bristol-Meyers-Squibb: Equity Ownership, Honoraria; Gilead Sciences: Equity Ownership; JNJ: Equity Ownership, Honoraria; MEI: Equity Ownership; Miragen Therapeutics: Equity Ownership; Novartis: Membership on an entity's Board of Directors or advisory committees; Portola Pharm: Equity Ownership; Sunesis Pharm: Equity Ownership; TG Therapeutics: Equity Ownership; Verastem Oncology: Equity Ownership, Honoraria. Pagel:AstraZeneca: Consultancy; Gilead Sciences: Consultancy; Pharmacyclics: Consultancy. Byrd:Gilead: Other: Travel Expenses, Research Funding, Speakers Bureau; Janssen: Consultancy, Other: Travel Expenses, Research Funding, Speakers Bureau; TG Therapeutics: Other: Travel Expenses, Research Funding, Speakers Bureau; TG Therapeutics: Other: Travel Expenses, Research Funding, Speakers Bureau; Novartis: Other: Travel Expenses, Speakers Bureau; Genentech: Research Funding; Ohio State University: Patents & Royalties: OSU-2S; Acerta: Research Funding; Acerta: Research Funding; Ohio State University: Patents & Royalties: OSU-2S; BeiGene: Research Funding; Pharmacyclics LLC, an AbbVie Company: Other: Travel Expenses, Research Funding, Speakers Bureau; BeiGene: Research Funding; Genentech: Research Funding; Pharmacyclics LLC, an AbbVie Company: Other: Travel Expenses, Research Funding, Speakers Bureau; Janssen: Consultancy, Other: Travel Expenses, Research Funding, Speakers Bureau; Novartis: Other: Travel Expenses, Speakers Bureau; Gilead: Other: Travel Expenses, Research Funding, Speakers Bureau. Skarbnik:Abbvie: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Verastem Oncology: Honoraria, Research Funding, Speakers Bureau; Kite Pharma: Honoraria, Speakers Bureau; Gilead Sciences: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Celgene: Consultancy, Honoraria, Speakers Bureau; Acerta: Research Funding; Seattle Genetics: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Genentech: Honoraria, Speakers Bureau; CLL Society: Consultancy, Membership on an entity's Board of Directors or advisory committees; Jazz Pharmaceuticals: Speakers Bureau; Novartis: Speakers Bureau; Pharmacyclics: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Janssen: Consultancy, Honoraria, Research Funding, Speakers Bureau. Davids:AbbVie, Astra-Zeneca, Genentech, Janssen, MEI, Pharmacyclics, Syros Pharmaceuticals, Verastem: Consultancy; Acerta Pharma, Ascentage Pharma, Genentech, MEI pharma, Pharmacyclics, Surface Oncology, TG Therapeutics, Verastem: Research Funding; Research to Practice: Honoraria; AbbVie, Acerta Pharma, Adaptive, Biotechnologies, Astra-Zeneca, Genentech, Gilead Sciences, Janssen, Pharmacyclics, TG therapeutics: Membership on an entity's Board of Directors or advisory committees. Danilov:Bristol-Meyers Squibb: Research Funding; Aptose Biosciences: Research Funding; Genentech: Consultancy, Research Funding; AstraZeneca: Consultancy, Research Funding; Gilead Sciences: Consultancy, Research Funding; Seattle Genetics: Consultancy; MEI: Research Funding; Bayer Oncology: Consultancy, Research Funding; Curis: Consultancy; TG Therapeutics: Consultancy; Takeda Oncology: Research Funding; Celgene: Consultancy; Janssen: Consultancy; Pharmacyclics: Consultancy; Verastem Oncology: Consultancy, Other: Travel Reimbursement , Research Funding; Abbvie: Consultancy.