Funding outcome

Sickle Cell Disease (SCD) is a complex, multi-system, chronic disorder. The disease manifests early and children are frequently admitted to hospital for pain, fevers, stroke, etc. with a life expectancy in the SO's. Most Albertan families are new immigrants from countries where the ability to manage disease complications may be limited. To further complicate matters, there is often isolation and stigma associated with SCD. Morbidity and mortality are high but within the western medical system there is hope for a cure with Bone Marrow Transplant (BMT). For many families the concept of cure is embraced fervently as they watch their children suffer and have experienced the devastating consequences of the disease as well as stigma from their community. Objective: to understand the changes in quality of life (Qol) for SCD patients the year after BMT. A multiple case study strategy, with embedded mix method (qualitative and quantitative) design will be applied. Data will be collected from multiple sources (patients, parents, 'patient-identified' support, patient medical records) 6 and 12 months after BMT. Data sources will include Qol surveys, interviews and medical records .. A complex, staged and iterative analysis within each case and across the cases will result in a rich description of each case as well as in patterns emerging across cases related to patients' Qol. Comprehensive knowledge translation activitif!s tailored for national and provincial SCD healthcare providers (HCP) from all vocations (webinars, workshops), SCD families (illustrated handout 'My BMT Journey'') and our research partner, the national patient advocacy group SCDAC as a catalyst to reach patients. We will also inform research through regular academic and professional fora.