Adherence promotion interventions in sickle cell care: Findings from a crowdsourcing study with healthcare providers
Aimee K Hildenbrand, Benjamin Bear, Jesus Arroyo, Amanda M Lewis, Robin Miller, Corinna L Schultz, Melissa A Alderfer, Lori CrosbyAbstract
Background
Adherence to long-term therapies for chronic health conditions is a substantial global challenge. For example, adherence to hydroxyurea, the primary disease-modifying therapy for sickle cell disease (SCD), is suboptimal in over two-thirds of individuals. Low hydroxyurea adherence is linked to increased disease complications, healthcare utilization, and costs and worse quality of life. The World Health Organization (WHO) Multidimensional Adherence Model posits that adherence is influenced by social and economic, healthcare team and system, disease, treatment, and patient-related factors. Interventions have been developed to address these adherence barriers among individuals with SCD (e.g., education, electronic medication monitoring, community health worker support, mobile health interventions). However, little is known about the actual use of these and other adherence promotion interventions in routine SCD care. This study used qualitative crowdsourcing methods to describe interventions clinicians use in routine SCD care to promote adherence to hydroxyurea and newer disease-modifying therapies.
Methods
As part of a larger study on implementation of disease-modifying therapies, healthcare professionals who care for people with SCD were recruited from across the United States. Maximum variation purposeful sampling was employed to enhance diversity in sociodemographic and professional characteristics (discipline, years in profession) and SCD clinics (region, patient volume). After completing electronic consent, providers joined a private online group on Slack. Each week, four to five questions were posed to the crowd, for five waves of data collection. Providers were encouraged to view and respond to others’ posts; they were paid $3 per response, with a $20 bonus if > 50% responded to each question. Adherence promotion interventions reported by healthcare providers were summarized using thematic content analysis. Coding criteria were developed through an iterative process combining theory (i.e., WHO Multidimensional Adherence Model) and data-based hierarchical coding schemes. Two raters independently coded each provider’s responses; the team then met to review, discuss, and resolve coding inconsistencies and clarify or revise coding criteria. Once interrater agreement was >80% for five consecutive transcripts, remaining transcripts were coded by a primary rater and reviewed for accuracy by a second coder. Coding discrepancies were resolved via group discussion to consensus.
Results
The 59 healthcare providers who participated identified as Asian (20%), Black or African American (10%), Middle Eastern (3%), or White (61%). Most were non-Hispanic/Latino (95%) and two-thirds (67%) were female. Participants included physicians (73%), advanced practice or nurse practitioners (22%), and nurses (5%), with 2-57 years in practice (M = 12.8, SD = 10.6). Providers were employed at SCD centers serving pediatric (37%), adult (29%), or both pediatric and adult patients (34%). Annual center volume ranged from 16 to 2200 patients (M = 420.5, SD = 405.1). Across data collection waves, response rates ranged from 53-59%. Consistent with the WHO Multidimensional Adherence Model, providers described delivering adherence promotion interventions across five domains: (1) social and economic (e.g., assistance with transportation, health insurance, healthcare costs, community and social support, employment, and housing); (2) healthcare team and system (e.g., strategies to enhance patient-provider communication and relationships, staff and resources for counseling and adherence support, changes to care delivery to reduce access barriers), (3) characteristics of SCD (e.g., addressing barriers related to symptom severity and comorbidities), (4) characteristics of the treatment (e.g., formulation changes, management of side effects), and (5) patient/family (e.g., improving knowledge, addressing beliefs and concerns, assisting with organization and planning; see Table 1). Many providers expressed a need for additional resources to address social and economic, healthcare team and system, and patient level adherence barriers.
Conclusions
Varied adherence promotion interventions are used in routine SCD care to address barriers across multiple levels. As the treatment landscape continues to evolve, adherence research that includes the perspectives of patients, families, medical providers and other members of the interdisciplinary SCD care team and examines effectiveness and scalability of adherence promotion interventions will be increasingly important to optimize care delivery and outcomes for this population.