Southeast 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

Alabama

• A Southeast RCC Co-PI is leading a project which is evaluating novel strategies to improve stroke screening for children living with Sickle

Cell Disease. Dissemination and Implementation of Stroke Prevention

Looking at the Care Environment (DISPLACE) Study (Kanter,

NCT04173026). Data are anticipated to be released June 2022.

ɕ Several SE RCC sites participate with this study, thus implementing strategies with their current SCD population. See here for additional information about this study and its findings. (https://www.uab.edu/medicine/sicklecell/research/displacetrial). In order to achieve a “stroke-free generation,” the goals of

DISPLACE are to:

ɐ Assess the gap between current and recommended evidence-based practice for stroke prevention in children with SCD ɐ Evaluate the effectiveness of a novel, multi-level dissemination and implementation strategy that engages providers, patients, and healthcare systems ɐ Use engagement to enhance implementation of annual

TCD screening and chronic red cell transfusion initiation at participating institutions for people living with SCD

Georgia

• One site changed their scheduling practices to try and improve TCD completion. This site began identifying those who needed a TCD each week and sent the list directly to the appointment scheduler. This site complemented this procedure change by following up with all missed appointments. With these changes, the site saw an increase in TCD completion rate from 42 percent to their current 74 percent.

About the Southeast RCC

Lead Organization

Levine Cancer Institute, Atrium Health

MAP LEGEND

Regional Coordinating Center (RCC)

Clinic/Participating Site

Community-Based Organization

Principal Investigators

• Julie Kanter, MD, Director, Adult Sickle Cell Program | Co-Director,

Lifespan Comprehensive Sickle Cell Research Center Hematology/

Oncology UAB Medicine | University of Alabama at Birmingham

Co-Principal Investigator • Ify Osunkwo, MD, MPH, Director, Adult Sickle Cell Disease Enterprise,

Atrium Health

Co-Principal Investigator • John Strouse, MD, PHD, Director of the Adult Sickle Cell Program |

Associate Professor of Medicine and Pediatrics, Duke University School of Medicine

Co-Principal Investigator

Kentucky

• Kentucky began standard HU use in 2012 with children 9-12 months.

This site compared the ED visit rate from 2012 to 2015. Between those time points there was a greater than 50 percent reduction in ED visits with that intervention. This site continues to follow this practice and has maintained these gains to this day.

South Carolina

• South Carolina is conducting QI work that looks at disease-modifying therapy, tracking TCD, and the benefit of pre-appointment checklists.

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

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 to meet timely needs.

Participating Clinics

• AL - University of Alabama at Birmingham • FL - University of Miami • GA - Augusta University, Emory University/CHOA • KY - University of Louisville • MS - University of Mississippi • NC - Duke University, Atrium Health • SC - Prisma Health • TN - **no current state lead

Participating Community-Based Organizations

• Piedmont Health Services and Sickle Cell Agency (North Carolina) • Bridges Pointe, Inc. Sickle Cell Foundation (North Carolina) • The Sickle Cell Foundation (Central Alabama) • SCDAA – Miami-Dade County Chapter, Inc. (Florida) • SCDAA – St. Petersburg Chapter, Inc. (Florida) • Sickle Cell Foundation, Inc. – Tallahassee (Florida) • Sickle Cell Foundation of Kentuckiana (Kentucky) • Sickle Cell Foundation of Georgia, Inc. • Huisman Sickle Cell Foundation of Augusta, Georgia • James R. Clark Memorial Sickle Cell Foundation (Columnia, South

Carolina)

• Southeast’s ECHO website is under development • Southeast-specific ECHO clinics include: ɕ Curative therapies (national audience) ɐ Hosted by Emory twice a month ɐ Aimed at hematology and transplant clinicians ɕ Psychosocial ɐ Hosted by Atrium Health

Additional Provider Teaching Opportunities

• The Georgia (Augusta) site conducted a patient satisfaction survey looking at satisfaction with subspecialty medical care delivered via telemedicine clinics (Stone et al., 2019). Results included: ɕ Telemedicine experience was demonstrated positive, with patient’s rating their experience at an average score of 3.79 out of a total of 4 points, for the 10 questions

ɕ A majority of families (42.5%) preferred telemedicine consultation to onsite physician visits; 91.3% would use telemedicine again; 89% would recommend telemedicine to others

ɕ Conclusions: Patients reported positive experiences with telehealth technology, staff, and hematologists. Telemedicine is a feasible approach to enhance access to hematology medical care for SCD

• Select site leads (from both the Northeast and Southeast RCCs) have been chosen to co-lead the American Society of Hematology-sponsored

SCD center training workshops which occurred in 2019 and will be held again in 2021.

• Some Southeast sites implemented a system in an adult program that requires that every SCD patient admitted gets assigned to the hospitalist’s service. With this revised system, hospitalists uniformly used one standardized inpatient order set for adults and a standardized order set in the ED. This provided consistency and helped providers feel comfortable treating patients. The lead PI of this site noted that with this change, the hospitalists only need to reach out to the SCD specialist for specific questions regarding patient care.

• South Carolina developed a transition and mentor programs

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

• The Georgia sites established phone-based telemedicine over 3 years ago and have provided transportation assistance to reduce barriers to care.

ɕ These sites relied on strong partnership to make this happen.

State leadership showed tangible support by supplying equipment and the staffing needed to make telemedicine visits possible early on. These groups also worked together to ensure that billing for these types of visits was reimbursable.

ɕ Nursing teams assist with scheduling, HIPAA compliance, intake, and tasks that were initiated with the start of telemedicine.

• In Kentucky, the addition of a care coordinator freed time for clinicians and ensured patients were linked to the psychologist and the social worker who could better support psychosocial needs.

• The South Carolina site is a large clinic that serves pediatric and adult patients. It established a comprehensive SCD specialty clinic which provides: ɕ Red blood cell exchange on-site services for patients (pediatrics and adults) who otherwise may have to travel to multiple locations for care ɕ Full-service TCD capacity, which was necessary for strong completion rates ɕ Pain management services in the hospital and as outpatient services that address the bias issues that patients often face when seeking pain management in EDs or pain clinics that do not have SCD experience ɕ Access to specialty medical providers, social workers, nursing psychiatry, research staff, sleep medicine, and child life specialists

Southeast Atrium: Created Zoom in N2U engagement and education sessions (PEEPs). This well-attended series covered an array of COVID-19 related topics.

Table 1. Patient Engagement Education Sessions During COVID-19 PATIENT ENGAGEMENT DURING COVID-19

SESSION EDUCATION SESSIONS DATE ATTENDEES

1 SCD in the Era of Coronavirus

(COVID-19) What You Need to Know! Pt. 1

2 SCD in the Era of Coronavirus

(COVID-19) What You Need to Know! Pt. 2

3/18/2020 97

4/1/2020 75

3 SCD in the Era of Coronavirus

(COVID-19) What You Need to Know! Pt. 3

4 (COVID-19) Q&A Session with the

Sickle Cell Team & Dr. Ify

5 Q&A Session with the Sickle Cell Team

& Dr. Ify

6 Let’s Talk About Stress, Anxiety,

COVID-19, & Coping Skills

7 PART 1: NC State Re-opening... What

Does That Mean for Someone Living with SCD?

8 PART 2: NC State Re-opening... What

Does That Mean for Someone Living with SCD?

4/8/2020 80

4/15/2020 49

4/22/2020 94

4/29/2020 66

5/13/2020 57

5/20/2020 65

9 What Does the New Norm Look Like

for Someone Living with SCD

5/27/2020 35

10 Fear • Anger • SCD #BlackLivesMatter 6/10/2020 87 11 Q&A SCD & COVID-19 7/1/2020 12 What is Your Sickle Cell Action Plan

During This Pandemic?

7/29/2020 75 • Florida instituted a missed appointment protocol thereby reducing these occurrences ɕ The site uses reminder calls the evening before and morning of TCD appointments, which has improved TCD completion rates and invested in patient-centered care and relationship building

Transition Planning

• Most states in the Southeast RCC have started recruiting for the

ST3P-UP Transition Study. One of the RCC leads, Dr. Ify Osunkwo, a grant called ST3P-UP to enhance transition and engage community partners. This study is comparing the effectiveness of adding virtual peer mentoring to a transition program in improving acute care reliance, quality of life, and satisfaction with the care transition process in young adults living with SCD. The care transition program is based on the six core elements of Got Transition®. (https://www.pcori.org/topics/ transitional-care/lessons-learned/engaging-community-partnersresearch-studies). The results are expected in May 2023.

• One of the Georgia sites is committed to addressing transition planning as a primary effort. They will share what they learn with the other GA clinics to ensure spread of best practices within this program.

• South Carolina has established care transition planning as a primary QI project. An initial review revealed that few care transition plans were documented. Since that time, the site has initiated a care transition readiness program that includes: ɕ Beginning the process at age 12; confirming that medical consent policy has switched over to the young adult by age 16; and a final goal to a full adult care model by age 18

ɕ Tracking completed educational pieces are in clinics EHR

ɕ Now, chart audits show that this site has 90 percent or more of patients with a transition plan in place and who had a readiness survey completed within the past six months (what the site uses as another success measure).

Partnership with Community-Based Organizations

• One SE CBO schedules regular monthly meetings for patients, where they can share concerns and needs. And the CBO invests in the community through their sponsorship of a fundraiser for scholarships for high school seniors who have SCD.

• Kentucky did not have an established relationship with the local CBO at the beginning of this most recent program period. With support from the Program, this site made improving communication and engagement a priority. The site hired a social worker with time dedicated to the

Program in order to grow this relationship. Today, the clinic and the CBO view themselves as a team. With more than 70 referrals from the clinic to the CBO in the past two years, the clinic has seen the impact that the connections make on a patient’s life. Because of the strong partnership, patients now communicate directly with the CBO to receive assistance or support. The evolution of this relationship has been important in educating and advocating within the clinic administration about the importance of easier access to the clinic and to patients.

References

Kanter, J. Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) Part 3. In.

Stone, R., Chung, Y., Stone, K., Ameri, A., & Pace, B. S. (2019). Telemedicine expands hydroxyurea monitoring for children living with sickle cell disease in rural south Georgia. Biomedical Journal of Scientific & Technical

Research, 22(1), 16380-16385.