Heartland/Southwest Regional Collaborative

Description of RCC Activities

Domain 1: Increase the number of providers treating individuals with sickle cell disease using the National Heart, Lung, and Blood Institute (NHLBI) Evidence-Based Management of Sickle Cell Disease Expert Panel Report

• Iowa, Arkansas, and Missouri developed innovative, team-based approaches to improve immunization rates among their patients. Specific activities included: ɕ Organizing comprehensive teams with providers from varying disciplines ɕ Providing extensive education on the need for immunizations among people living with SCD ɕ Reviewing timelines for distribution ɕ Planning pre-clinic huddles ɕ Developing clinic prep sheets

• Worked with their IT departments to develop immunization order sets for patients with SCD in their EHR systems

• Developed algorithms for common issues arising in SCD patients (i.e., timely treatment of vaso-occlusive crisis, use of intranasal fentanyl EHR order sets), post-discharge communication, and follow-up

Arkansas

• Overhauled their entire immunizations process to improve rates. This new process included:

ɕ Working with their health department, which has a wellestablished immunization database that pulls directly into their medical record system. Once this connection is established, data reflected vaccination status no matter where they are given ɕ Creating a new EHR order set that established an internal system to review immunization needs prior to each appointment ɕ Changing clinic flow to allow doctors to order vaccines prior to clinic visits so vaccines could be pre-stocked in their medication

About the Heartland/Southwest RCC

MAP LEGEND

Regional Coordinating Center (RCC)

Clinic/Participating Site

Community-Based Organization

Lead Organization

Washington University School of Medicine, St. Louis

Principal Investigator

• Allison King, MD, PhD, MPH

Data Manager

• Taniya Varughese, MSOT, OTR/L

Participating Clinics

• AR - University of Arkansas for Medical Sciences, Arkansas Children’s

Hospital and Research Institute • IA - University of Iowa Stead Family Children’s Hospital • KS - University of Kansas Medical Center • LA - Louisiana State University Pediatrics, New Orleans Children’s

Hospital 46

dispensing system. The nursing teams were then able to release orders as soon as the child arrived to clinic. With this process, blood is drawn and vaccines are given before patients are seen by the physician.

Iowa

• Conducted an innovative project on pain assessment with their pediatric population. They distributed the Youth Acute Pain Functional Ability

Questionnaire (YAPFAQ), a self-report measure of physical function in youth experiencing acute pain. Results from this assessment help providers better understand how pain is functionally limiting a patient (e.g., making it difficult to complete activities of daily living, falling asleep, listen to providers). Early findings show: ɕ 93 percent of pediatric patients (n=14) are knowledgeable about YAPFAQ and its purpose ɕ 70 percent of nurses noted that YAPFAQ made a difference in the pain management they provided to pediatric patients

Missouri (St. Louis Children’s Hospital)

• Developed a QI project to improve pain management for inpatients with

SCD to reduce time to treatment and increase satisfaction with pain management. For this project they: ɕ Consulted pain management services ɕ Increased the use of non-opioid adjuvant pain medications

Texas

• Established a collaborative process with their radiology team so that

TCDs are always scheduled with a general SCD appointment. Patients receive their TCD first so that the result is ready by the time they are seen for their general appointment.

• Overhauled its data system to be able to track HU prescription rates.

Domain 2: Use telementoring, telemedicine, and other provider support strategies to increase the number of providers administering evidence-based SCD care

State Plans

For 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 Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program • MO - Washington University School of Medicine, Barnes Jewish Hospital,

St. Louis. Children’s Hospital, Truman Medical Center, Missouri

University Health Care • NE - University of Nebraska Medical Center, Children’s Hospital and

Medical Center • OK - University of Oklahoma Health Sciences Center • TX - Baylor College of Medicine, Texas Children’s Hospital

Participating Community-Based Organizations

• Sickle Cell Association (St. Louis) • St. Louis Integrated Health Network • Sickle Cell Association of South Louisiana and Baton Rouge Sickle Cell

Anemia Foundation • Supporters of Families with Sickle Cell Disease (Oklahoma) • Sickle Cell Association of Texas, Marc Thomas Foundation

The state action plans described:

• How each state intended to develop a network of providers using evidence-based SCD care in the state

• How telemedicine/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 may be helpful to states interested in similar work.

Heartland/Southwest’s Plan

RCC ECHO Website

RCCs found the Project ECHO® approach to be effective and manageable for knowledge sharing. They report high use and impact of Project ECHO® and expressed desire for continued support to expand this capacity.

Using this model increased their ability to offer SCD-specific regional and national sessions. RCCs were responsible for planning, organizing, and facilitating ECHO sessions tailored to their regional needs and convening national ECHOs as needed. Content covered SCD-focused information, from basic science to psychosocial needs. ECHOs often focused on regionspecific content and cases to best support providers where they served patients. However, all RCC ECHOs were “open” and people from any geographic location within the country and world were able to attend. Some recorded the education sessions to ensure the greatest reach possible. RCCs noted that making ECHO open to all, live and recorded, was an important service for providers in their regions for whom they were not able to educate more directly due to geographic or resource limitations. RCCs were grateful that the infrastructure for this telementoring option was established as this allowed sites to continue with virtual platforms throughout the pandemic.

Additional Provider Teaching Opportunities

• Several Heartland/Southwest sites partnered with the American Society of Hematology and their Clinical Trials Network, including participation with SCD-centered workshops.

• Heartland/Southwest PI provided bi-monthly consultation to providers on patients with SCD through Centene, a healthcare network that delivers services across all 50 states.

Domain 3: Develop and implement strategies to improve access to quality care with emphasis on individual and family engagement/partnership, adolescent transitions to adult life, and care in a medical home

Improving Access to Quality Care

• One Missouri site piloted an SCD-focused, shared medical appointment process, modeled after a diabetes self-management program, to increase patient understanding of disease self-management and facilitate engagement and trust. Patients had access to a psychologist, pharmacologist, and a nurse practitioner during the appointment.

• Other sites in the Heartland/Southwest started to bundle appointments together. Although their clinic appointments are longer, patients can now see the hematologist, pulmonologist, social worker, as well as get their TCD and necessary immunizations all in one visit. Patients and their families have been very pleased with the efficiency of services and decreased need for multiple clinic visits.

Transition Planning

Several sites worked to improve care transition planning. For example, select regional sites offered care transitioning patients tours of the adult clinic and adult hospital services, and meet and greets with the adult providers prior to formal care transition. Pediatric sites have been more hands-on in the care transition process and continue to offer care coordination to help adolescents schedule their first appointments in the adult clinic and provide check-ins to make sure patients successfully made it to their adult appointments.

• The Heartland/Southwest RCC PI held a weekly young adult transition clinic to help ease the transition process for young adults aged 18 to 26 years. Because the young adult clinic is smaller, the team can offer personalized care, especially spending time to address self-management skills and psychosocial stressors that may impact their success in managing their disease independently. Since 2017, over 50 individuals have passed through the young adult clinic, with many successfully transitioning to the adult clinic upon matriculation.

• The Heartland/Southwest RCC hosts a regional website and routinely updates it with a list of adult providers throughout the region who are accepting new patients.

• A Heartland/Southwest RCC occupational therapy student developed a life skills and transition self-management program founded on implementation science principles. The program has discrete modules addressing pertinent areas of need (disease education and awareness, selfefficacy and communication skills, and adult self-management skills) for adolescents and young adults living with SCD. This program is currently being piloted solely through telehealth. Interim analysis and next steps include:

ɕ The 5 participants who have completed the program report significant increases in SCD-related self-efficacy and improvement in SCD knowledge and transition readiness skills post intervention.

ɕ This program will continue to recruit more participants and

Washington University published the modules and protocol for national dissemination and plans to adopt this work into standard of care.

• Oklahoma created an EHR template for improving documentation for care transition planning. They also designated a nurse practitioner and social worker to lead a “Sooner Success” Health Care Transition

Committee to pilot a study to improve rates of pediatric patients with written care transition plans and documented care transition skills.

Partnership with Community-Based Organizations

• The Oklahoma CBO successfully forged partnerships with local and state agencies, including the Oklahoma Health Care Authority Initiative and

Oklahoma Sickle Cell Collective Impact Team, to provide community awareness, advocacy, outreach, and comprehensive community-based care for people living with SCD throughout the state.

ɕ As a funded grantee of the SCDAA HRSA Newborn Screening

Program, the CBO was able to train dedicated community health workers to engage unaffiliated patients and connect them to clinical care.

• The Texas CBO worked closely with the RCC state lead to provide more than 750 clients with:

ɕ Certified case management referrals to assist with social security and disability applications and renewals, housing, and transportation ɕ Counseling, transition services, care coordination, medical home placement, scholarship programs, and other financial assistance ɕ Organization of several SCD-focused camps (Camp Cell-A-

Bration, ESCAPE, and Camp Next Level) ɕ Support group meetings and free sickle cell trait testing ɕ Organization of community awareness and advocacy events, including conferences and walks.

• The St. Louis CBO regularly hosted community education and awareness events, including walks, provider panels, and discussions on the importance of participation in research. The St. Louis CBO also:

ɕ Offered monthly support groups and real-time advocacy services to patients who were in the ED or inpatient at local hospitals ɕ Mentored smaller CBOs throughout the region to develop effective programming for their patients ɕ Collaborated with medical providers at local institutions to champion the development of three task forces to improve access to quality care for people living with SCD, focusing on: ɐ Improving transition readiness for adolescent patients ɐ Improving pain management in the ED ɐ Working with legislators to inform policy changes for SCD