Healthcare Domain 2

Additional Areas of RCC Focus on Evidence-Based Care

Much of the work described in this report focuses on the clinical areas of HU, immunizations, and TCD. However, the RCCs conducted important work in several other areas covered by NHLBI report, including – and especially – management of pain crises.

Pain Management

Pain crises are a hallmark of SCD and the NHLBI 2014 Evidence-Based Management of Sickle Cell Disease report has several robust clinical recommendations regarding pain management (National Heart Lung and Blood Institute, 2014). People with SCD who present in pain to emergency departments (EDs) and other clinical settings need immediate attention. Because of the particular importance of addressing and improving this area of care, the Program has developed a recommendation about ED care and this report provides a deeper look into activities of the RCCs and the challenges of managing pain crises, especially given the opioid epidemic.

Impact of Bias on People with SCD

All RCCs discussed the impact that systemic bias has on their patients. At the patient level, there is inequitable access to care, unequal attention to treatment development compared to other types of conditions, and significant bias – especially as it relates to obtaining timely and appropriate pain care. As noted by the National Academies of Science, Engineering, and Medicine SCD (National Academies of Sciences Engineering and Medicine, 2020), when discussing SCD care and the people with SCD, it is essential to point out that stigma, implicit bias, and racism are key societal factors that contribute to the burden of disease. Pain management of SCD is impacted by these factors, especially those that exist in patient and provider interaction. Addressing and decreasing the impact of these factors is essential to increase provider comfort and overall improvement in SCD care when treating this population. RCC activities to address this issue included: conducting hospital-wide implicit bias training; discussing cases that demonstrated unwarranted differences in care; and addressing the issue directly by educating providers and confronting bias. Appendix A contains examples of RCC activities related to addressing bias.

Use telementoring, telemedicine, and other provider support strategies to increase the number of providers administering evidence-based SCD care

Domain 2 Highlights

• Leveraging the Program infrastructure and support built through state plans, teaching opportunities, and provider-to-provider communication,

RCCs expanded the knowledge base and comfort level of providers across the U.S. with this program, improving access to care for people living with

SCD.

• Engaging and training a broad range of providers, both specialist and non-specialist (e.g., primary care and hematology/oncology physicians, nurse practitioners, and physician assistants) using Project ECHO® and other education opportunities to increase knowledge among providers.

Topics ranged from disease-modifying therapies, psychosocial issues, insurance barriers and practice guidelines. This resulted in more than 3,700 attendees of telementoring, which strengthened care locally and nationally.

• Using telementoring quickly addressed emerging information and provider education needs caused by the challenges of the COVID-19 pandemic.

Program Providers

Through the PSPM, RCCs assessed care delivered by providers who care for this population. The data obtained provides insight into the composition of providers who worked closely with the RCCs and responded to the survey. When reviewing these data, consider the following: the pool of providers who were sent and answered the survey each year varied and the COVID-19 pandemic was occurring during the second survey. Overall, the data reflect and highlight national trends: • A relatively small subset of clinicians provide the vast majority of care for people with SCD • Most SCD care is provided by specialists (hematologists) rather than

PCPs and other generalists • Few SCD care providers are located in rural settings RCCs initiated the following surveys: In YR1, 1,854 providers were sent the PSPM. Using a refined definition of SCD provider inclusion, in YR2, 1,220 providers were sent the PSPM. The total number of responding providers YR1: 516. The total number of responding providers YR2 was: 306.

PSPM findings include: • Majority of providers treating patients are medical doctors within the

Program: YR1 406/516 (78.7%); YR2 236/306 (77.1%) • Approximately one-third (1/3) of providers in the Program only see adult patients, one-third (1/3) only see pediatric patients, and the remaining one-third (1/3) see both • Specialists comprised the majority of providers: ɕ Y1: Hematologists: 10,885/27,078 (40.2%); Hematologists/ Oncologists: 11,082/27,078 (40.9%), leading to a total percentage of 81.1 percent ɕ Y2: Hematologists: 14,081/25,712 (54.8%); Hematologists/ Oncologists: 8,071/25,712 (31.4%), leading to a total percentage of 86.2 percent • Nearly all clinicians affiliated with the RCCs were in an urban setting: YR1 497/516 (96.3%); YR2 277/306 (90.5%) and 50 percent or more worked in a practice affiliated with a university or medical school YR1 256/516 (49.6%);

YR2 194/306 (63.4%) Nationally, there is a pressing need for more providers who are willing and adequately prepared to care for people with SCD, especially adult care providers. Lack of adult providers is particularly concerning to pediatric specialists who must rely on this next group of providers during the important time of transition to adult care. Deeper discussion of need for providers is in Appendix B. While the limited number of hematologists is a focal point, other providers, including radiologists, pulmonologists, cardiologists, orthopedics, nephrologists, social workers, psychologists, and supportive care providers who understand SCD are also needed and in limited supply. RCCs noted these shortages and how it negatively impacts adequate, timely care. The Program included two areas of work to increase provider knowledge and to support training providers to follow NHLBI care guidelines: 1) knowledgesharing, and 2) improving comfort and confidence level of providers who may care for people with SCD.

Knowledge-Sharing

Knowledge-sharing between trusted colleagues is an effective way of increasing awareness. The Program offered education and training support to increase the education of providers, clinicians, and staff improving the lives of patients. This section describes the ways RCCs, states, and participating sites sought to share information and expertise during the Program.

Sharing State Plans

As part of the Program, RCCs developed a Regional Sickle Cell Action Plan and state-specific Sickle Cell Action Plans for funded states. The plans included: 1) resources in each region and state to improve SCD care for all people with SCD in the region, and 2) a description of the overall infrastructure that would address the goals and requirements listed in the Funding Opportunity Announcement. The state action plan described: • How each state intended to develop a network of providers using evidence-based SCD care in the state • How telemedicine and telehealth strategies and other provider support would be utilized • How access to quality care would be supported • How the state intended to increase the number of individuals with SCD being treated by providers using evidence-based SCD care These plans were used to help formulate a cohesive approach to facilitate knowledge-sharing. Discussions spurred by these state plans brought forth a regional vision and strong partnerships with the RCCs that continues today. Information included in state plans may be helpful to states interested in doing similar work. Appendix B contains two full plan examples.

Provider-to-Provider Communication

RCCs conducted provider-to-provider education to increase provider capacity. Given the need to build the next generation of pediatric and adult SCD providers, the Program providers spent time in discussions, fielding questions, and sharing their individual expertise with other providers. They also dedicated time formally, including conducting grand rounds, giving educational seminars, and using Project ECHO® (Extension for Community Healthcare Outcomes) to educate residents and physicians across disciplines. Telementoring with Project ECHO® During the past decade, telementoring has proven to be a highly successful approach to supporting clinicians remotely, and Project ECHO®, created by Sanjeev Arora, MD, at the University of New Mexico, was an important tool for RCCs to expand training and professional education in the Program. More information about Project ECHO® and how it works is in Appendix B. The Program has developed a recommendation about telementoring. RCC ECHOs RCCs found the Project ECHO® model effective and manageable for knowledge-sharing, reporting that it helped form a larger community for participants to engage and exchange information. Expert providers within the Program network shared their expertise with attendees. RCCs supported a general regional ECHO, while some also developed topic specific ECHOs, including ones to address emerging COVID-19 needs. A description of RCC activities using the Project ECHO® model is in Appendix A. The Program collected data on ECHO participation in the CQIM and PSPM.

CQIM

RCCs reported quarterly counts of total number of providers attending telementoring ECHO sessions via the CQIM. Over the four time periods of data collection reflected, the total number of attendees of ECHO sessions was 3,745. Counts include all sessions a provider attended; attendees could have been counted more than once if they attended multiple sessions in the data collection time frame. Counts were aggregated into 6-month increments. See Table 11.

Table 11. CQIM: Providers Participating in the Program ECHO Telementoring Sessions in Six-Month Increments