Improving Preventive Care for Children With Sickle Cell Anemia: A Quality Improvement Initiative

Cabana, Michael D.; Marsh, Anna-Marie; Treadwell, Marsha; Stemmler, Peggy; Rowland, Michael L.; Bender, Melissa; Bhasin, Neha; Chung, Jong Hee; Hassell, Kathryn L.; Rashid, Nighat; Wong, Trisha E.; Bardach, Naomi S.

doi:10.1097/pq9.0000000000000379

Cited by 5 publications

(1 citation statement)

References 13 publications

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“…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). More than 90% of patients with SCD are Black, and 3%-9% are Hispanic (2); thus, racism and existing health care disparities compound barriers to care for children with SCA.…”

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.

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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.

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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.

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Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions

Bogetz,

Strub,

Bradford

et al. 2024

Journal of Pain and Symptom Management

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Successful quality improvement project to increase hydroxyurea prescriptions for children with sickle cell anaemia

et al. 2023

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Hydroxyurea (HU) is an effective but underused disease-modifying therapy for patients with sickle cell anaemia (SCA). EMBRACE SCD, a sickle cell disease treatment demonstration project, aimed to improve access to HU by increasing prescription (Rx) rates by at least 10% from baseline in children with SCA.The Model for Improvement was used as the quality improvement framework. HU Rx was assessed from clinical databases in three paediatric haematology centres. Children aged 9 months–18 years with SCA not on chronic transfusions were eligible for HU treatment. The health belief model was the conceptual framework to discuss with patients and promote HU acceptance. A visual aid showing erythrocytes under the effect of HU and the American Society of Hematology HU brochure were used as educational tools. At least 6 months after offering HU, a Barrier Assessment Questionnaire was given to assess reasons for HU acceptance and refusals. If HU was declined, the providers discussed with family again. We conducted chart audits to find missed opportunities to prescribe HU as one plan–do–study–act cycle.At initial measurement, 50.2% of 524 eligible patients had HU prescribed. During the testing and initial implementation phase, the mean performance after 10 data points was 53%. After 2 years, the mean performance was 59%, achieving an 11% increase in mean performance and a 29% increase from initial to the last measurement (64.8% HU Rx). During a 15-month period, 32.1% (N=168) of the eligible patients who were offered HU completed the barrier questionnaire with 19% (N=32) refusing HU, mostly based on not perceiving enough severity of their children’s SCA or fearing side effects.Reviewing patient charts for missed opportunity of offering HU with feedback and evaluating the reasons of declining HU via a questionnaire were key components in increasing HU Rx in our population.

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Improving Preventive Care for Children With Sickle Cell Anemia: A Quality Improvement Initiative

Cited by 5 publications

References 13 publications

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

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

Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions

Successful quality improvement project to increase hydroxyurea prescriptions for children with sickle cell anaemia

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