sickle cell disease (scd) decision aid

Conditions: Sickle Cell Disease

Summary: the purpose of this study is to gather decision making needs information from caregivers and patients with sickle cell disease (scd) in order to develop a web-based decision aid tool. study subjects will participate in interviews defining treatment decision making needs during which investigators will ask information about their scd. notes taken from these interviews will allow the research team to better understand current practice related to clinical practice and allow for better refinement of the decision aid tool. an additional group of participants will be asked to review the web-based sickle cell decision aid. participants will be asked to describe thoughts about the site, including but not limited to ease of navigation, content and construction. this study will provide information for the conduct of a randomized controlled trial for the use of a web based decision aid to give patients with sickle cell disease and parent/legal guardian of children with sickle cell disease accurate information about risks and benefits of therapies and enable them to make decisions based on their individual values and preferences.

the purpose of this study is to understand patient, family and caregiver needs when making a decision about treatment for their sickle cell disease (scd). investigators are developing a decision aid tool that can help people understand scd treatment options. one group of subjects will participate in qualitative interviews defining treatment decision making needs during which investigators will ask information about their scd. investigators will also discuss treatment choices: hydroxyurea, chronic or monthly blood transfusions and bone marrow transplantation. participants will be asked their thoughts about how to develop a web-based decision aid tool. notes taken from these interviews will allow the research team to better understand current practice related to clinical practice and allow for better refinement of the decision aid tool. an additional group of subjects will review the web-based sickle cell decision aid. participants will be asked to navigate the site. as the participant navigates the site, the study interviewer will ask the participants to describe thoughts about the site, including but not limited to ease of navigation, content and construction. testing may be performed in-person or via telephone. using qualitative data collection methods, questions will be analyzed allowing for increased focus of questions based on common themes and issues identified during ongoing analysis. this study will provide information for the conduct of a randomized controlled trial for the use of a web based decision aid to give patients with sickle cell disease and parent/legal guardian of children with sickle cell disease accurate information about risks and benefits of therapies and enable them to make decisions based on their individual values and preferences.

Eligibility criteria:
inclusion criteria: -individual diagnosed with sickle cell disease (scd) or parent/legal guardian/caregiver of individual (of any age) diagnosed with scd exclusion criteria: there are no exclusions to study participation.