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IMPACT OF CLL SOCIETY’S (CLLS) FREE EXPERT ACCESS PROGRAM (EAP) FOR CHRONIC LYMPHOCYTIC LEUKEMIA (CLL) PATIENTS (PTS)
Author(s): ,
Brian Koffman
Affiliations:
CLL Society,Claremont,United States
,
John M. Pagel
Affiliations:
Center for Blood Disorders and Stem Cell Transplantation,Swedish Cancer Institute,Seattle,United States
,
Neil Bailey
Affiliations:
Center for Blood Disorders and Stem Cell Transplantation,Swedish Cancer Institute,Seattle,United States
,
Andy Kaempf
Affiliations:
Knight Cancer Institute, Oregon Health and Science University,Portland,United States
,
Byung Park
Affiliations:
Knight Cancer Institute, Oregon Health and Science University,Portland,United States
,
Liza Avruch
Affiliations:
CLL Society,Claremont,United States
,
Christopher X. Lee
Affiliations:
InfiniteMD,Boston,United States
,
Babak Movassaghi
Affiliations:
InfiniteMD,Boston,United States
,
John C. Byrd
Affiliations:
Division of Hematology, Department of Internal Medicine,The Ohio State University,Columbus,United States
,
Alan P. Skarbnik
Affiliations:
Division of Lymphoma and Chronic Lymphocytic Leukemia,Novant Health,Charlotte,United States
,
Matthew S. Davids
Affiliations:
Department of Medical Oncology,Dana-Farber Cancer Institute,Boston,United States
Alexey V. Danilov
Affiliations:
Department of Hematology,City of Hope National Medical Center,Duarte,United States
(Abstract release date: 05/14/20) EHA Library. Koffman B. 06/12/20; 297828; PB1912
Brian Koffman
Brian Koffman
Contributions
Abstract

Abstract: PB1912

Type: Publication Only

Background
It has long been suggested that expert care can improve outcomes in CLL. Moreover, over the past several years the  landscape for CLL treatment has rapidly changed, often making it challenging for providers. Many patients do not have access to CLL experts due to geography, insurance or cost. Telemedicine provides a straightforward method of secure HIPAA compliant access to CLL experts.

Aims
The nonprofit CLL Society, working with 10 CLL specialists provided a free, second opinion from a CLL expert using an online platform with the aim of assessing whether we could positively impact pt care. Here we report for the 1st time a comparison of the pre- and post-survey data from the EAP. 

Methods
EAP registration was available at CLLSociety.org with links shared on CLL pt forums and in weekly alerts sent to >5,000 patients and caregivers. It was promoted at 12 CLLS pt educational forums and 28 support groups in the USA. To qualify, pts needed a diagnosis of CLL, residence in the USA, and to not be seeing a CLL expert. A CLL expert was defined as a physician primarily caring for CLL pts and who also does CLL research. Applications were screened for inclusion criteria, and if accepted pts completed an intake survey, had their electronic records obtained and synopsized for consulting expert review and scheduled an online HIPAA-compliant video consultation. Pts participated in a 30-minute video consultation with the CLL physician during which time they were able to ask questions specific to their concerns. Following the consultation, pts received a written summary to share with their local treatment team and were asked to complete a post-consultation survey. Survey data was analyzed using descriptive statistics. 

Results
105 EAP consults were performed between 2017-19. From the pre-consultation survey, the average age was 62 years and 53% were male. Patient confidence grew in all areas post consultation (Table).

Post-consultation, 95% stated the convenience of an online consultation was an important benefit. Only 2 pts did not find the online experience easy (hearing trouble and video issues). 99% said they would recommend EAP. 82% strongly agreed and 12% agreed that they had confidence in the EAP physician and trusted their expertise, 5% strongly disagreed and 1% was neutral.

74% of consultations led to changes in care management, including 24% planned to see a new doctor, 35% planned to do additional testing, and 55% would consider a clinical trial.

Relatively small sample size and incomplete data collection are the limitations of this study. While pre- and post-consultation surveys were mostly consistent, slight variations in the wording of some questions may have skewed the results.

Conclusion
Access to CLL experts through EAP provides a cost-effective, patient-friendly method, which has the potential to positively impact long-term pt outcomes. While confidence in their local treatment team nearly doubled after the consult, 74% of pts planned to pursue changes in management, including a change in healthcare team (24%). The EAP provides the opportunity to both strengthen confidence in present care and at the same time offer new information.

Session topic: 06. Chronic lymphocytic leukemia and related disorders - Clinical

Keyword(s): Chronic lymphocytic leukemia

Abstract: PB1912

Type: Publication Only

Background
It has long been suggested that expert care can improve outcomes in CLL. Moreover, over the past several years the  landscape for CLL treatment has rapidly changed, often making it challenging for providers. Many patients do not have access to CLL experts due to geography, insurance or cost. Telemedicine provides a straightforward method of secure HIPAA compliant access to CLL experts.

Aims
The nonprofit CLL Society, working with 10 CLL specialists provided a free, second opinion from a CLL expert using an online platform with the aim of assessing whether we could positively impact pt care. Here we report for the 1st time a comparison of the pre- and post-survey data from the EAP. 

Methods
EAP registration was available at CLLSociety.org with links shared on CLL pt forums and in weekly alerts sent to >5,000 patients and caregivers. It was promoted at 12 CLLS pt educational forums and 28 support groups in the USA. To qualify, pts needed a diagnosis of CLL, residence in the USA, and to not be seeing a CLL expert. A CLL expert was defined as a physician primarily caring for CLL pts and who also does CLL research. Applications were screened for inclusion criteria, and if accepted pts completed an intake survey, had their electronic records obtained and synopsized for consulting expert review and scheduled an online HIPAA-compliant video consultation. Pts participated in a 30-minute video consultation with the CLL physician during which time they were able to ask questions specific to their concerns. Following the consultation, pts received a written summary to share with their local treatment team and were asked to complete a post-consultation survey. Survey data was analyzed using descriptive statistics. 

Results
105 EAP consults were performed between 2017-19. From the pre-consultation survey, the average age was 62 years and 53% were male. Patient confidence grew in all areas post consultation (Table).

Post-consultation, 95% stated the convenience of an online consultation was an important benefit. Only 2 pts did not find the online experience easy (hearing trouble and video issues). 99% said they would recommend EAP. 82% strongly agreed and 12% agreed that they had confidence in the EAP physician and trusted their expertise, 5% strongly disagreed and 1% was neutral.

74% of consultations led to changes in care management, including 24% planned to see a new doctor, 35% planned to do additional testing, and 55% would consider a clinical trial.

Relatively small sample size and incomplete data collection are the limitations of this study. While pre- and post-consultation surveys were mostly consistent, slight variations in the wording of some questions may have skewed the results.

Conclusion
Access to CLL experts through EAP provides a cost-effective, patient-friendly method, which has the potential to positively impact long-term pt outcomes. While confidence in their local treatment team nearly doubled after the consult, 74% of pts planned to pursue changes in management, including a change in healthcare team (24%). The EAP provides the opportunity to both strengthen confidence in present care and at the same time offer new information.

Session topic: 06. Chronic lymphocytic leukemia and related disorders - Clinical

Keyword(s): Chronic lymphocytic leukemia

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