Study Status: Completed
Recruit Status: Completed
Study Type: Interventional
Official Title: Comparative Effectiveness of a Decision Aid for Therapeutic Options in Sickle Cell Disease
Brief Summary:
Sickle cell disease (SCD) is an inherited disorder with chronic multi-system manifestations affecting 100,000 individuals in the US, largely of minority origin and associated with substantial morbidity, premature mortality, individual suffering, healthcare costs and loss of productivity. Disease modifying treatments such as Hydroxyurea, chronic blood transfusion and curative bone marrow transplantation are offered to patients based on physician preference and current practice informed by clinical trials. Decision aids are tools that could help translate evidence from these sources into practice by helping clinicians involve patients in making deliberate choices based on accessible information about the options available and their outcomes and to help them make decisions based on their values and preferences.
The overarching goal of this project is to develop and implement a web based decision aid individualized to patient characteristics to help patients with SCD achieve more accurate perception of risks and benefits of treatment options and make decisions in congruence with their values and preferences.
The investigators will conduct needs assessment interviews as indicated by the data for saturation and validation of findings. The investigators will conduct beta testing of the web-based decision aid to clarify development and validate findings. The investigators will use a randomized controlled trial of the effectiveness of a web-based decision aid to give patients accurate information about risks and benefits of therapies and enable them to make decisions based on their individual values and preferences.
To provide accurate information to patients and caregivers about the risks and benefits of various treatments for sickle cell disease and to enable them to make informed