Development and evaluation of a patient empowerment video to promote hydroxyurea adoption in sickle cell disease.

Background: For the last decade, compelling evidence on hydroxyurea (HU) efficacy in certain adult patients with sickle cell disease (SCD) has supported recommendations for use of this drug to decrease morbidity and medical costs. Despite these benefits, HU therapy is underused in patients meeting treatment criteria. The purpose of this study was to develop and evaluate an educational video to empower patients and their families to initiate a conversation with their physicians on the benefits and risks of HU, encouraging a shared decision-making process.

Methods: Patients with SCD and physicians with prominence in the sickle cell community were selected to participate in the video based on their communication skills. They were encouraged to answer interview questions on camera with language that could be easily understood by all patients. Two focus groups participated in the development process verifying the messages in the video were clear and easy to understand. A pre- and postdesign survey of patients was performed to assess patient acceptability and utility of the video.

Results: A 15-minute educational video was produced and modified from input of the focus groups. Impact of the refined educational video was evaluated with a patient survey. Patients expressed a strong desire after viewing the video to learn about potential benefits of HU. Furthermore, the video was useful in heightening the intent of patients to ask their health care providers about HU therapy.