Discordant Beliefs, Perceptions, and Experiences between Patients with Sickle Cell Disease and Their Care Teams: Insights from a Pilot Program to Support Shared Decision-Making

Background

For patients with sickle cell disease (SCD), shared learning, understanding, and decision-making with their healthcare providers (HCPs) is critical for achieving treatment goals. Using a validated collaborative learning model (Sapir 2017), we evaluated patient and HCP perceptions of shared decision-making (SDM) related to SCD treatment.

Methods

In June 2020, 113 patients/caregivers of patients with SCD and 30 HCPs participated in 3 live, virtual collaborative learning sessions developed with the Sickle Cell Disease Association of America (Table 1). Before and after the sessions, patients and their HCPs completed tethered surveys to assess alignments and discordances in preferences, experiences, and concerns around SCD treatment and SDM.

Results

Patients and HCPs held discordant beliefs about the degree of patients’ progress toward treatment goals. While HCPs estimated that only 29% of their patients are on track to meet their goals, 85% of patients reported that they felt somewhat (39%) or fully (46%) on track. The magnitude of this discrepancy suggests that patients may not be aware of treatment milestones they are not reaching.

Participants differed in their perceptions of how often HCPs engage patients in SDM (Figure 1). Relative to patients’ estimates, HCPs were more likely to report that they usually or always: ask about the patient’s goals for treatment (41% vs 61%), work with the patient to create a treatment plan (47% vs 55%), explain their own goals for the patient’s treatment (47% vs 55%), and explain the pros/cons of each treatment choice (47% vs 55%). The biggest missed opportunity for SDM involved how often HCPs ask patients about stigma related to opioids for pain management (28% vs 35%).

The reported lack of communication around stigma may contribute to providers’ underestimation of how often their patients encounter stigma. HCPs estimated that 47% of their patients have faced barriers to adequate pain management in the ER due to opioid stigma and/or poor knowledge of pain crises among ER staff. By comparison, 74% of patients reported ever feeling that ER doctors, nurses, or staff questioned their need for pain medication during a pain crisis (20% once; 54% more than once).

When asked why patients are not more involved in SDM (Figure 2), HCPs were more likely to select patient factors: feeling too overwhelmed to make treatment decisions (52% HCPs, 14% patients), low health literacy (49% HCPs, 12% patients), and lack of confidence in validity of opinions/concerns (44% HCPs, 10% patients). In contrast, patients were more likely to report that they are completely involved in treatment decisions (40% patients, 4% HCPs) and that they trust their care team to make decisions on their behalf (37% patients, 30% HCPs).

Regarding adjusting SCD therapy, HCPs overestimated how many patients were concerned about learning a new routine/schedule (23% HCPs, 7% patients), but underestimated concerns about being able to pay for it (4% HCPs, 9% patients). HCPs correctly estimated concerns about knowing whether treatment will work (33% HCPs, 34% patients), fear of side effects (29% HCPs, 25% patients), and knowing how to manage a pain episode (9% HCPs, 9% patients). Overall, HCPs underestimated how many patients would not worry about switching treatment (1% HCPs, 9% patients).

Following the collaborative learning sessions, patients made commitments to talk to their care team about their treatment goals (52%), consider treatment options more closely (50%), take a more active role in decision-making (46%), and notify their care team with concerns (41%). HCPs set goals to increase the types of educational materials they provide (57%), attempt to ease the transition to the adult care setting (50%), engage their patients more frequently in SDM (47%), and train colleagues on how to conduct additional learning sessions (34%).

The full data set with 2 additional learning sessions (Aug 2020) will be presented.

Conclusions

Patients with SCD and their care teams differed in their experiences and beliefs related to SDM. Collaborative education can reveal opportunities for greater understanding and facilitate improved patient-provider communication, leading to greater engagement in SDM around SCD treatment.

Study Sponsor Statement

The study reported in this abstract was funded by an independent educational grant from bluebird bio. The grantor had no role in the study design, execution, analysis, or reporting.