Abstract
BackgroundSickle cell disease (SCD) is an inherited blood disorder that results in a lifetime of anemia, severe pain, and end-organ damage that can lead to premature mortality. While the SCD field has made major medical advances, much needs to be done to improve the quality of care for people with SCD. This study capitalizes on the Sickle Cell Disease Implementation Consortium (SCDIC), a consortium of eight academic sites aiming to test implementation strategies that could lead to more accelerated application of the NHLBI guidelines for treating SCD. This report documents the process to support the consortium by specifying the interventions being developed.MethodsThis study consists of three steps. The Principal Investigator of each site and two site representatives who are knowledgeable of the intervention (e.g., study coordinator or the person delivering the intervention) will answer an online survey aiming to capture components of the interventions. This survey will be completed by the site representatives three times during the study: during the development of the interventions, after one year of the interventions being implemented, and at the end of this study (after 2 years). A site visit and semi-structured interview (Step 2) in the first year of the process will capture the context of the sites. Step 3 comprises of the development of a framework with the details of the multi-component SCDIC interventions at the sites.DiscussionThe outcome of this study, a framework of the SCDIC, will enable accurate replication and extension of published research, facilitating the translation of SCD studies to diverse populations and settings and allowing for theory testing of the effects of the intervention components across studies in different contexts and for different populations.Trial registrationClinicalTrial.Gov (#NCT03380351). Registered December 21, 2017.
Highlights
Sickle cell disease (SCD) is an inherited blood disorder that results in a lifetime of anemia, severe pain, and end-organ damage that can lead to premature mortality [1]
The primary outcome of this process will be a detailed framework of the Sickle Cell Disease Implementation Consortium (SCDIC) interventions that will support rigor and transparency, enable the Consortium to evaluate which intervention components were most effective in which settings, and will offer guidance to future efforts to improve treatment delivery and improve quality of life and life expectancy for adults living with SCD
Guided by the recent report by the National Academy of Engineering (NAE) and the Institute of Medicine (IOM) calling for applying systems engineering methods to healthcare systems [45], we will focus on different levels that are interdependent and necessary to improve the quality of care
Summary
Data collection The data collection for this study will have three phases: Step 1 will be a survey conducted prior to intervention implementation to capture the details of the proposed intervention. The survey will be conducted again, in addition to site visits (Step 2) to capture any differences between what was proposed and what is being implemented. Step 3 – which will take place on the second year 3 of this study, involves the sites’ representatives answering the survey again and developing a framework with detailed description of the SCDIC interventions. Step 2: Site visits and follow up calls Because we know that the interventions proposed will probably be adapted during the implementation process [42], we will ask the site representatives to answer the survey one year after the interventions are being implemented. We will evaluate thematic saturation (i.e., no new themes will be captured with further analysis) and follow the Consolidated criteria for reporting qualitative research (COREQ) guidelines when reporting our findings [56]
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