Taking Shared Decision Making from Concept to Clinical Practice: What Do Sickle Cell Healthcare Providers Need?

Introduction: The landscape of therapies for sickle cell disease (SCD) is rapidly evolving. While hydroxyurea remains the gold standard treatment, since 2017 the FDA has approved three additional drugs (i.e., L-glutamine, voxelotor, crizanlizumab), and many others are under investigation. Thus, new therapies and multi-agent treatment approaches for SCD are on the horizon, along with increasingly complex treatment decisions for patients, caregivers, and clinicians. Best practice SCD guidelines recommend shared decision making (SDM; NHLBI, 2014) and SCD patients and caregivers strongly prefer a SDM approach when considering disease-modifying therapies (Jabour et al., 2019; Ross et al., 2016). SDM is a collaborative process in which patients, caregivers, and clinicians work in partnership to reach healthcare decisions based on scientific evidence and the patient’s/caregiver’s values, preferences, and treatment goals (Stiggelbout et al., 2012). SDM enhances patient and parent knowledge, engagement in the decision making process, and satisfaction with care (Stacey et al., 2014; Wyatt et al., 2015) and is particularly beneficial for marginalized groups (Durand et al., 2014). Evidence also suggests positive impacts of SDM on more distal outcomes, including adherence to the selected treatment (Hauser et al., 2015; Joosten et al., 2008) and health outcomes (Hauser et al., 2015; Tapp et al., 2017). However, few tools are available to facilitate SDM for SCD therapies (Crosby et al., 2019), and most healthcare providers who care for youth with SCD have not had specific training in SDM (Yawn et al., 2014). This study examined clinician perspectives on resources needed to foster SDM in the context of disease-modifying treatment decisions for SCD.

Methods: SCD providers were recruited from across the United States using maximum variation purposeful sampling to ensure diversity in provider characteristics (age, sex, race, discipline, years in profession) and clinics (region, patient volume). After electronic consent, providers completed a demographics survey and joined a private online “crowd” on Slack. There were five waves of data collection; during each wave, a series of 4-5 questions were posed to the crowd. Providers were paid for each question they answered and encouraged to view and respond to others’ posts. Thematic content analysis was used to summarize perspectives on resources needed to help healthcare providers better engage patients and caregivers in SDM for sickle cell therapies. Two raters independently coded each provider’s responses; coding discrepancies were resolved via group discussion to consensus.

Results: Of the 59 SCD providers who enrolled, approximately two-thirds were female (67%) and 61% were White; the remainder of the sample identified as Asian (20%), Black or African American (10%), or Middle Eastern (3%). Most were non-Hispanic or Latino (95%). Providers included physicians (73%), nurse practitioners or advanced practice nurses (22%), and nurses (5%) with a wide range of years in practice (2 – 57, M=12.8, SD=10.6). Providers were employed at care centers serving pediatric patients (37%), adult patients (29%), or both pediatric and adult patients with SCD (34%), with annual patient volume ranging from 16 to 2200 (M=420.5, SD=405.1). Across the waves of data collection, response rates ranged from 53-59%.

These clinicians identified five resources necessary to optimize SDM for disease-modifying therapies: 1) well-staffed multidisciplinary care teams; 2) high quality patient education materials; 3) billing and reimbursement policies that incentivize SDM; 4) resources to address social determinants of health barriers; and, 5) peer mentoring and support programs for patients. See Table 1 for illustrative quotes.

Conclusions: Providers identified several supports and resources to facilitate SDM with individuals with SCD. Findings from this study will inform the development of a multi-component SDM intervention, including decision support tools for patients, caregivers, and healthcare providers and clinic-based implementation tools.

Acknowledgements: This research was supported by the National Institute of General Medical Sciences of the National Institutes of Health under Award Number P20GM109021. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.