Understanding Hydroxyurea Utilization in Sickle Cell Disease: Exploring Patient and Provider Attitudes and Beliefs

Abstract

Introduction Hydroxyurea (HU), a first line sickle cell disease (SCD) modifying drug, has a 22%-48% utilization rate, according to national estimates (Lanzkron 2006, Stettler 2015, Knisely 2020). There are numerous factors identified as barriers to adherence of hydroxyurea such as access to care (Badawy 2017). Given the high frequency of SCD inpatient admissions at the University of Chicago Medical Center (UCMC) and thus the limited opportunity for outpatient care where disease modifying therapies can be initiated, we proposed a quality improvement project to monitor HU education and usage during inpatient encounters. Methods Our project was reviewed by the UCMC Institutional Review Board and approved to meet quality improvement (QI) determination. To address the question of HU initiation in SCD during inpatient encounters, we surveyed key stakeholders including patients with SCD and providers. We identified consecutive patients with SCD who were either established with primary care or hematology at UCMC (n=197) and distributed our deidentified survey through a REDCap secure link to patients with active email accounts (n=135). We designed a provider survey eliciting knowledge, beliefs, and perspectives on HU use in SCD and distributed this through REDCap to 182 frontline providers. We analyzed the data qualitatively, identifying patterns and common themes from aggregate responses and free text answers. Results The patient survey response rate was 31% (n=42/135). Forty-five percent (n=18) of patients agreed that they missed follow up appointments due to admissions. Approximately half of patient respondents indicated they were not taking HU (n=19). Additionally, of those patients, 72% (n=14) indicated they would be willing to deal with the side effects of HU if it improved their SCD symptoms and 32% (n=6) said they would consider initiation of HU during an inpatient encounter. Patient respondents cited the benefits of HU, including improving quality of life (33%; n=13), preventing pain episodes (43%; n=17), improving mortality (18%; n=7), and helping prevent hospitalizations (36%; n=14). In terms of further education, 35% (n=14) of patient respondents indicated they would like to learn more about HU. 88% (n=35) indicated they would like to learn more about other disease modifying therapies. The provider survey response rate was 73% (n=132/182), of whom, 40% (n=52) were IM or Med/Peds residents, 28% (n=37) were medicine attendings, and 11% (n=15) were Hematology/Oncology faculty or fellows. 98% (n=129) of respondents overall agreed that HU initiation should be offered to patients with SCD during inpatient encounters and that the benefits of HU in SCD outweighed the potential harms. Providers requested tools to facilitate prescribing HU during inpatient encounters, including bundled orders ("orderset") within the EMR (55%; n=73), an option for inpatient SCD consult services (28%; n=37), education sessions and materials (45%; n=59), and a linked outpatient hematology referral system (58%; n=77). Conclusion: Results from our patient survey demonstrate an unmet need for expanding access to HU into inpatient encounters and providing access to other disease modifying therapies and potential cures. Providers would be comfortable with initiation and monitoring of HU during inpatient SCD encounters. To facilitate this, providers request additional education and process resources. Results from both surveys inform a plan to address disparities in HU utilization rates among patients with SCD at UCMC, in addition to providing opportunities to enhance SCD care overall. The path forward will include building curricula for providers, educational handouts on disease modifying therapies for patients, generating a HU prescribing orderset embedded in the EMR, and innovating a SCD inpatient consult service at UCMC.