Development of a Provider-Focused Intervention to Improve Health Outcomes in Pediatric Sickle Cell Disease

The goal of this interventional study is to learn about the impact of an intervention for health care providers that teaches individuation and perspective-taking (IPT) skills to enhance patient-centered communication in pediatric sickle cell disease (SCD). The main question it aims to answer is: Does an intervention that teaches individuation and perspective-taking (IPT) skills to pediatric sickle cell disease (SCD) health care providers (HCPs) enhance patient-centered communication? Researchers will compare the IPT intervention to a control group who will receive education about SCD pain management to see if the IPT intervention improves patient-centered communication. Participants will complete baseline surveys and then be randomly assigned into the intervention or control group. After completing their assigned session (IPT training or education), they will be asked to complete the same surveys as completed at baseline.

Research documents poor health outcomes for youth with sickle cell disease (SCD), and interventions for patients and families demonstrate only variable effectiveness. More recent studies have called for interventions targeting health care providers (HCPs) to improve patient health outcomes. We developed and piloted an individuation and perspective-taking (IPT) intervention for pediatric SCD HCPs. IPT currently consists of one 90-minute virtual training session that incorporates didactic education and practice using the IPT skills in the context of SCD patient stories. After reviewing didactic information about the impact of patient-centered communication on patient health behaviors (e.g., adherence), HCPs are introduced to the two IPT skills and taught how to practice them by changing their communication with patients. HCPs then watch short videos that are publicly available online depicting 3-5 patients with SCD that differ in demographics and symptom presentation. The intervention facilitator uses verbal prompts (e.g., How do you think that patient must be feeling?) to assist HCPs in applying the IPT skills to each of these patients. Finally, the facilitator leads a discussion about HCP responses that are and are not consistent with the IPT skills and explores ways HCPs can apply the skills in their clinical practice. This single-session virtual format was well-received and deemed feasible by HCPs in our formative work, who expressed concerns about attending multiple sessions. The primary objective is to test the preliminary efficacy of the IPT intervention on improving patient-centered communication in a multi-center sample of pediatric SCD HCPs using a randomized design. HCPs from three medical centers will be randomized to the IPT intervention or to a didactic information control group, completing pre- and post-test measures to assess changed in patient-centered communication. We hypothesize that the IPT intervention will have positive effects on HCP communication and has the potential to impact patient-reported (e.g., trust, satisfaction with care, and self-efficacy) and clinical health (e.g., pain management, frequency of admission, hydroxyurea adherence) outcomes for adolescents with SCD. Improving HCPs patient-centered communication may increase patients' disease management self-efficacy, thereby improving adherence to preventative measures and reducing the frequency of emergent encounters and hospital admissions.

Inclusion Criteria: * Licensed health care provider (HCP) who provides care to youth with SCD * HCP employed by Connecticut Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia and primary work area is Hematology/Oncology Exclusion Criteria: * HCP who does not provide care to youth with SCD * HCP is a medical trainee, not including fellows * HCP not employed by CT Children's, Yale New Haven Children's Hospital, or Children's Hospital of Philadelphia * Not fluent in English