Introduction: The purpose of this survey is to understand the extent of telehealth utilization for persons with sickle cell disease (SCD), while also determining possible barriers patients may have in accessing care and providers using this tool. . Community-Based Organizations (CBOs) in five states (California, Colorado, Oregon, Nevada, and Arizona) obtained feedback directly from patients with SCD on managing their care via telehealth during the current COVID-19 pandemic.
Methods: Phone calls were made by CBOs in five states, to their specific patient database between May 11 - 29, 2020. A series of 17 questions were asked to obtain information from patients with SCD, parents of children with SCD, or caregivers of a person with SCD. All data was de-identified. CBOs that participated in data collection included the Sickle Cell Disease Foundation (California), Colorado Sickle Cell Association, Sickle Cell Anemia Foundation of Oregon, Sickled Not Broken Foundation of Nevada, and Sickle Cell Foundation of Arizona.
Results: A total of 199 patients or caregivers of patients living with sickle cell disease were surveyed. Of these individuals, 121 (61%) were female and 78 (39%) were male. The most prevalent SCD hemoglobinopathy reported among patients was Hgb SS (68%) followed by Hgb SC disease at (20%). Hgb SB or other variants were surveyed at (9%), while (3%) were unknown. Participants with Hgb SS disease at (46%) were female while (22%) were male. Overall, the majority of patients fell within the age range of 18-35 (50%). Female patients were 18-35 yrs (30%), 0-17 yrs (18%) or > 36 yrs (13%). Male patients ranged from 18-35 years (20%), 0-17 yrs (12%), and 36 or older (7%). When surveying patients about their primary languages, the majority of participants spoke English (92%), while others spoke Spanish (5%), French (1%), Somali (1%), and Creole (1%). Individuals, who were not fluent in English, desired translated material to assist them in better understanding their disease and managing their care.
To understand patient access to care via telehealth platforms during a global pandemic, we asked questions with the following themes: familiarity with telehealth services, the willingness or ability to access services and healthcare utilization patterns during COVID-19. Of those surveyed, 55% indicated that they have heard of or have participated in telehealth services. Importantly, 85% reported familiarity or the ability to download Zoom, and 80% reported interest in connecting with a provider via telehealth services. When asked about access to WiFi and to tools used to navigate online systems, the majority of patients indicated they had access to WiFi (95%) and would access telehealth services through any of the following devices: mobile phones (71%), computers (59%) or tablets (17%). Survey respondents also indicated they had assistance at home with accessing telehealth sessions (64%) while the remaining (46%) indicated that they would be interested in having a Community Health Worker provide them with support in getting started with telehealth services.
When asking patients about health care utilization during the COVID-19 pandemic only 35% of patients indicated they went to an emergency room for care while the remaining 65% did not. Of note, 53% of those surveyed reported managing their SCD crisis at home, with 52% of all patients reporting that they reached out to SCD providers (hematologists with expertise in treating patients with sickle cell disease) for advice and care recommendations rather than risking exposure to COVID in the ER. In addition, patients indicated that they had difficulty getting prescriptions refilled or were unable to afford their medications (16%). Lastly, almost all patients indicated an interest in having access to a 24-hour hotline for SCD care (94%).
Conclusion: The utilization of CBOs to provide ancillary support services is necessary to continue to understand patient needs, not only during a global crisis but after for routine health care. Our survey demonstrated that most patients have access to the technology needed to connect to their healthcare teams. However, access to a knowledgeable provider should be strengthened to ensure patient competence and comfort with self-management while utilizing telehealth resources. Finally, clinical care teams are recommended to enhance access to telehealth services and provide additional community resources to improve access to care.
Fields:Imara Inc.: Consultancy. Brown:Novartis: Consultancy; Global Blood Therapeutics: Consultancy, Membership on an entity's Board of Directors or advisory committees.
Asterisk with author names denotes non-ASH members.