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.
- Chronic disease management
- Healthcare quality improvement
Data availability statement
Data are available upon reasonable request. The data to make the charts are available upon reasonable request.
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Contributors OAA, JK, JJS and IO planned the hydroxyurea prescription quality improvement project. OAA, SE, HR-C and ELJC executed the work. CC, LN and TB-M conducted data analysis and critical consultation on the quality improvement project. OAA wrote the manuscript with significant contribution and revisions from all coauthors and also accepts full responsibility for the work as guarantor and conduct of the project, had access to the data, and controlled the decision to publish. All authors gave final approval to the version to be published and agreed to be accountable for all aspects of the work.
Funding This work has been funded by Health Resources and Services Administration (HRSA) under grant U1EMC31108.
Competing interests ELJC and IO report employment by Forma Therapeutics, now part of Novo Nordisk. IO also reports funding by Patient-Centered Outcomes Research Institute (PCORI) for another study.
Provenance and peer review Not commissioned; externally peer reviewed.
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