Impact of the COVID-19 Pandemic on the Program

The U.S. Department of Health and Human Services declared a public health emergency on January 27, 2020, because of confirmed cases of 2019 Novel Coronavirus. COVID-19 caused significant disruption to health care systems throughout the U.S., and many SCD providers in the SCDTDRCP were engaged in either front line care or planning and developing procedures and processes, or both, to respond to evolving needs. Healthcare systems and individual providers quickly implemented new workflows and treatment approaches to provide essential care for people living with SCD -- who were at high risk for serious complications of COVID-19. The pandemic directly affected SCD care and the implementation of the Program for at least 18 months, half the Program. Across the board, RCCs had to temporarily halt or change their operations, which altered some clinical and CBO services for people with SCD. These changes impacted the activities and data collection of the Program.

SCD Clinical Care and CBO Services

Though clinics and care teams could not operate under standard procedures they pivoted to support their SCD population and their organizations as well as they could. See Appendix A for RCC COVID-related activities. Given the potential of deadly infection for this immunocompromised patient group, clinicians did everything they could to keep their patients out of EDs to reduce the possibility of virus infection. While there was variation by state, clinic and location, programs implemented strict changes to their clinical operations and community offerings, including: • Staffing triage calls 24 hours a day so no patient would go to the hospital before speaking to someone on the SCD team • Allowing only one caregiver in pediatric practices, and no companions in adult care units, except to support patients with cognitive dysfunction • Providing protection for adult patients with end organ damage, especially lung disease, to bypass waiting areas and go directly to patient care rooms • Working with hospital administration to give up dedicated SCD dayclinic space such as for blood transfusions to in-patient rooms for those sick with COVID-19 • Merging pediatric care centers to allow for opening more adult care locations, given the number of adults needed treatment for COVID-19 As COVID-19 halted in-person meetings across the U.S., the ability to regularly share information among providers in person decreased and, in many cases, abruptly ceased, as did most community programming — having to be canceled or modified to a virtual platform. RCCs found that while they lost the opportunity for informal teaching and sharing, the established structure of the Program network allowed them to continue their ability to quickly exchange information through telementoring such as Project ECHO® which became essential during the pandemic. RCCs capitalized on their experience using this model to expand COVID-19 offerings to quickly meet the information and education needs of attendees. COVID-19 prompted the necessity to offer telehealth for patient/provider medical visits more broadly and frequently. While some clinics had deep experience providing direct-to-patient telehealth prior to COVID-19, it was not highly utilized in many clinics, resulting in implementation challenges and barriers (such as equipment or device access, connectivity, technology literacy, inability of some patients to use video visits, etc. for both patients and providers). Given that telehealth is likely to continue at higher levels than pre-pandemic, these issues must continue to be resolved. Further, while telehealth appointments are a valuable option, they cannot replace all clinical appointments for this population; some services must be completed in person (for example, TCDs, medication adjustment, acute pain management, transfusions, assessing disease progression). Positively, reimbursement mechanisms were quickly established to support this important care offering and RCCs recommend that such mechanisms continue for care continuity.

Program Data Collection Impact

A core activity of the Program was data collection to measure select aspects of SCD care. The following describes how the three data methodologies were impacted by the pandemic.

Effects of COVID-19 on the PSPM Data Collection

Originally, three annual PSPM surveys were planned. The second survey was originally slated to begin May 1, 2020. By April 2020, it was clear that fielding this provider survey was not a reasonable ask of RCCs or potential respondents. The Program decided to delay the May 2020 survey and launch it in September 2020. Due to timing, the September 2020 PSPM was the final survey of the Program. Therefore, the Program fielded a total of two provider surveys (vs. a planned three rounds of fielding).

Impact of COVID-19 on Clinical Quality Improvement Measure Data Collection

In March and April 2020, the NCC held conversations with RCC teams during individual monthly check-in calls to learn how the pandemic was impacting programs, local sites, and capacity to collect data; all sites believed they could collect and submit CQIM data as scheduled. The RCCs were in close contact with most sites to monitor data submission progress; for example, in Q1 2020, furloughs in two regions meant that some sites were unable to submit data. The RCCs annotated in NICHQ’s CoLab and the NCC noted the fluctuation of sites submitting data during the course of the Program. Qualitative data were collected for a comprehensive picture of the activities of the Program. Originally, the NCC planned to attend regional meetings in person to collect information about RCC programming and activities from all participants. Due to the pandemic, these data were limited and collected through virtual interviews with all RCC leads and up to three sites that were identified by each of the RCCs. While the preceding describes aspects of the known impact of the pandemic on data collection, the RCCs relayed other ways in which COVID-19 may have impacted reported data. For example, to avoid the risk of exposure at large health care systems, immunization may have increased at community locations such as schools and community pharmacies, where documenting completion of this service might be missed or not included in a person’s health record. As noted in the data appendix, this could have exacerbated fractured record keeping and unanticipated reduction in reporting. As well, several other factors could have contributed to areas of data collection, such as patient reduction in completion of in-clinic appointments either because of personal fear, clinical capacity or decreased access to transportation. This could have reduced numbers of measures completed (i.e., TCD, immunizations, HU prescriptions). Finally, due to other clinical demands, QI projects stopped or slowed during the course of the pandemic potentially impacting progress in some areas. For more information on how the pandemic affected the Program data collection efforts, see Appendix C: Data Methodology. For more information on the ways RCCs pivoted to ensure critical services during the COVID-19 pandemic, see Appendix A: RCC Activities.