Recommendation to reality: Closing the transcranial Doppler screening gap for children with sickle cell anemia

Singh, Ashima; Danda, Vanaja; Swol, Laura Van; Scott, John; Brandow, Amanda M.

doi:10.1002/pbc.28831

Cited by 6 publications

(4 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…TCD screening rates in Lake County prior to the establishment of the SCORE outreach clinic (25%) 9 were similar to those reported in an analysis of Medicaid claims from Illinois, Florida, Missouri, Michigan, South Carolina, and Texas, which found only 22%‐44% of eligible children received the recommended screening 6 . SCD center‐specific data revealed slightly higher screening rates of 63% at baseline that increased to 80% after a quality improvement initiative utilizing electronic health record reminders 7 . The closest TCD screening facility was 65 miles from Lake County, adding an additional barrier to families who often lack access to personal transportation and rely on a state Medicaid transportation service to attend medical appointments.…”

Section: Discussionsupporting

confidence: 72%

“…The only validated predictive indicator of organ damage is transcranial Doppler (TCD), which identifies children (> 2 years old) at highest risk for stroke 4 . TCD screening rates are historically low despite its proven effectiveness at identifying children at high risk of stroke 5–7 . The glaring need for high‐quality care for all children with SCD in the United States was highlighted in a 2021 New York Times article that told the story of sisters who never received stroke screening with TCD and ultimately had devastating strokes 8 .…”

Section: Introductionmentioning

confidence: 99%

“…4 TCD screening rates are historically low despite its proven effectiveness at identifying children at high risk of stroke. [5][6][7] The glaring need for high-quality care for all children with SCD in the United States was highlighted in a 2021 New York Times article that told the story of sisters who never received stroke screening with TCD and ultimately had devastating strokes. 8 Lake County, Indiana, is a prime example of children who are not receiving evidence-based, guidelinecentered care for SCD.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

No child left behind: Building a comprehensive sickle cell disease care oasis in the Lake County, Indiana care desert

Brown

Hampton

Bloom

et al. 2022

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background: Sickle cell disease (SCD) leads to end-organ damage and shortened life expectancy. The second highest incidence of SCD in Indiana is in Lake County, but until 2017, there was no SCD expert within 65 miles. The Indiana Hemophilia and Thrombosis Center (IHTC) developed the Sickle Care coordination OutReach and Education (SCORE) program in 2017 to bring high-quality, guideline-based care to children with SCD. Procedure: The St. Vincent IRB deemed this retrospective analysis of SCORE clinic care from 2017 to 2020 exempt. Data on the number of transcranial Dopplers (TCD) performed, HU dosing escalation, and vaccine rates were collected along with the number of school and home visits completed. Results: Fifty-three children, adolescents, and young adults completed 288 SCORE clinic visits during the study period; over 75% completed at least three clinic visits. Mean HU dose increased significantly with SCORE clinic care. TCD screening rates increased every year starting in 2018 through 2020 when we added local care coordination. One hundred seventy-three vaccines were administered in SCORE outreach clinics. The PPSV23 vaccines had a 100% acceptance rate, and seasonal influenza had a 75.8% acceptance rate. Conclusion: Access to care coordination services and local hematology specialty care alleviates barriers to care and enables comprehensive SCD care delivery to children in need. Prior to the establishment of the SCORE clinic, 75% of children in Lake County were not receiving recommended stroke screening. The SCORE clinic model demonstrates feasibility and impact when delivering on the promise of high-quality care for children with SCD.

show abstract

Section: Discussionsupporting

confidence: 72%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

No child left behind: Building a comprehensive sickle cell disease care oasis in the Lake County, Indiana care desert

Brown

Hampton

Bloom

et al. 2022

Pediatric Blood & Cancer

View full text Add to dashboard Cite

show abstract

“…Promising quality-care initiatives to reduce some barriers have been reported. One SCD center leveraged electronic health records to enhance case management and improve TCD tracking and scheduling and enlisted support specialists to help young children remain relaxed during the procedure; they reported sustained increases in TCD screening, from 63% at baseline to >70% (18). A regional collaborative of SCD clinics reported a significant increase in hydroxyurea counseling (from 85% to 98%) after implementation of a program in which clinic staff members and families developed standardized approaches to track preventive care (19).…”

Section: Discussionmentioning

confidence: 99%

Vital Signs: Use of Recommended Health Care Measures to Prevent Selected Complications of Sickle Cell Anemia in Children and Adolescents — Selected U.S. States, 2019

Schieve¹,

Simmons²,

Payne³

et al. 2022

MMWR Morb. Mortal. Wkly. Rep.

View full text Add to dashboard Cite

Introduction: Sickle cell disease (SCD), a group of inherited blood cell disorders that primarily affects Black or African American persons, is associated with severe complications and a >20-year reduction in life expectancy. In 2014, an expert panel convened by the National Heart, Lung, and Blood Institute issued recommendations to prevent or reduce complications in children and adolescents with the most severe SCD subtypes, known as sickle cell anemia (SCA); recommendations included 1) annual screening of children and adolescents aged 2-16 years with transcranial Doppler (TCD) ultrasound to identify those at risk for stroke and 2) offering hydroxyurea therapy to children and adolescents aged ≥9 months to reduce the risk for several life-threatening complications. Methods: Data from the IBM MarketScan Multi-State Medicaid Database were analyzed. TCD screening and hydroxyurea use were examined for 3,352 children and adolescents with SCA aged 2-16 years and continuously enrolled in Medicaid during 2019. Percentage change during 2014-2019 and variation by health subgroups were assessed. Analyses were stratified by age. Results: During 2014-2019, TCD screening increased 27% among children and adolescents aged 10-16 years; hydroxyurea use increased 27% among children aged 2-9 years and 23% among children and adolescents aged 10-16 years. However, in 2019, only 47% and 38% of children and adolescents aged 2-9 and 10-16 years, respectively, had received TCD screening and 38% and 53% of children and adolescents aged 2-9 years and 10-16 years, respectively, used hydroxyurea. For both prevention strategies, usage was highest among children and adolescents with high levels of health care utilization and evidence of previous complications indicative of severe disease. Conclusion and Implications for Public Health Practice: Despite increases since 2014, TCD screening and hydroxyurea use remain low among children and adolescents with SCA. Health care providers should implement quality care strategies within their clinics and partner with patients, families, and community-based organizations to address barriers to delivering and receiving recommended care.* A more comprehensive summary of the genetics, epidemiology, and health outcomes associated with SCD, the health care needs of persons affected by SCD, and their challenges to receipt of optimal care can be found at National Academies of Sciences, Engineering, and Medicine. 2020. Addressing sickle cell disease: a strategic plan and blueprint for action. Washington, DC: The National Academies Press.

show abstract

DISPLACE study shows poor quality of transcranial doppler ultrasound for stroke risk screening in sickle cell anemia

Davidow,

Miller,

Phillips

et al. 2024

Blood Advances

View full text Add to dashboard Cite

Children with sickle cell anemia (SCA) are at increased risk of stroke when compared to age-based counterparts. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) previously demonstrated that with the use of transcranial Doppler ultrasound (TCD; Sickle Stroke Screen) and chronic red cell transfusion, the risk of stroke risk is reduced by over 90%. The STOP criteria detailed the type and method of measurement required; the time averaged mean maximum velocity (TAMMV). Unfortunately, it has been difficult to adhere to the appropriate TAMMV measurements. The objectives of this study were to assess the quality of TCD and transcranial Doppler imaging (TCDi) reports to determine report quality and accuracy. This is a sub-analysis of the DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study. Over 12,000 TCD/TCDi reports were collected during this study from 28 institutions; 391 TCDs were reviewed for this sub-analysis. There was significant variation in which vessels were assessed, the velocities used to define abnormal results, and who was interpreting the scans. In 52% of reports, it was impossible to identify whether the TAMMV was what was measured. Similarly, it was only clear in 42% of reports that the TAMMV was used to interpret the exam as normal/abnormal. Given this inconsistency, we strongly recommend standardization of TCD/TCDi reporting, specialized training for those performing and interpreting the scans in the use of TCD/TCDi in patients with SCA, internal quality assurance, and institutional quality improvement work to ensure appropriate use of this potentially lifesaving technology.

show abstract

Recommendation to reality: Closing the transcranial Doppler screening gap for children with sickle cell anemia

Cited by 6 publications

References 17 publications

No child left behind: Building a comprehensive sickle cell disease care oasis in the Lake County, Indiana care desert

No child left behind: Building a comprehensive sickle cell disease care oasis in the Lake County, Indiana care desert

Vital Signs: Use of Recommended Health Care Measures to Prevent Selected Complications of Sickle Cell Anemia in Children and Adolescents — Selected U.S. States, 2019

DISPLACE study shows poor quality of transcranial doppler ultrasound for stroke risk screening in sickle cell anemia

Contact Info

Product

Resources

About