An Electronic Teaching Module for Improving Knowledge of Self-Management of Vaso-Occlusive Pain Crises in Patients With Sickle Cell Disease: Pilot Questionnaire Study

BACKGROUND: For patients with sickle cell disease (SCD), effective management of vaso-occlusive crises (VOCs) is integral to provision of care, as nearly all affected individuals will suffer from VOCs in their lifetime. A recent systematic review of technological interventions to improve self-management in the care of SCD concluded that electronic health has the potential to improve the care of individuals with SCD. OBJECTIVE: The aim of this study was to assess the value of an electronic teaching module (ETM) provided by Emmi Solutions for educating adult SCD patients on VOC self-management and treatment options for SCD. METHODS: A pretest assessed adults with SCD for baseline knowledge with regard to self-management of VOCs. Participants then watched the 35-min ETM and completed a posttest and survey on the ETM. RESULTS: A total of 20 adults enrolled. Their knowledge scores improved (pretest median 66.5% and posttest median 85%; P<.001). In total, 18 participants (18/20, 90%) agreed that they “learned a lot” or “learned something” from the ETM. The most common topic about which they reported learning was hydroxyurea. A total of 12 participants (12/20, 60%) agreed with the statement that they “would recommend the module to a friend or family member with sickle cell disease.” CONCLUSIONS: The ETM is associated with an increase in knowledge in patients with SCD. Limitations of the study include small sample size, no assessment of knowledge before premodule questionnaire completion, and no longitudinal follow-up. Identifying patients with SCD who demonstrate affinity for self-education via an ETM may further enhance utility of this tool to educate and empower patients.