Protocol for a Scoping Review on Barriers to Optimal Care for Sickle Cell Disease (SCD)

Background and Rationale Sickle Cell Disease (SCD) is a chronic and debilitating genetic blood disorder that affects individuals from birth and throughout their lives. It significantly impacts the physical, emotional, and social well-being of affected individuals, particularly in resource-limited settings such as many African countries, where universal access to healthcare is limited and SCD is not yet part of the public health program. It requires lifelong management genetic blood disorder that requires comprehensive and continuous care. Despite advancements in medical knowledge and treatment options, individuals living with SCD often face significant barriers to receiving optimal care. Understanding and mapping these barriers is important for improving healthcare delivery, patient outcomes and overall quality of life of persons living with SCD. The goal of this scoping review is to provide a comprehensive overview of the types of barriers documented in the literature, the contexts in which they occur and potential strategies to address them. Objective To identify, map, and synthesize published literature on barriers to healthcare for individuals living with Sickle Cell Disease (SCD) Research Questions • What are the documented barriers to optimal care for individuals with SCD? • In what contexts (e.g., geographic, socioeconomic, healthcare settings) do these barriers occur? • What strategies have been proposed or implemented to overcome these barriers? Methodology The scoping review will follow the methodological framework approach described by Arksey and O’Malley (Arksey and O'Malley 2005) and Levac et al(Levac, Colquhoun, and O'Brien 2010). The method consists of five stages: 1) formulating the research questions, 2) identifying relevant studies, 3) selecting eligible studies, 4) charting the data and 5) collating, summarising and reporting the results. Search Strategy Databases: EBSCOhost (Medline and CINAHL) Keywords and Search Terms: “Sickle Cell Disease" OR "Sickle Cell Anemia OR Sickle Cell " AND "Barriers" OR "Challenges" AND “Healthcare OR Health care” Inclusion Criteria: • Empirical Studies that report on barriers to optimal care, including but not limited to healthcare access, socioeconomic factors, healthcare provider knowledge, patient education, and healthcare policies. • Context: All geographic locations • Types of Studies: Qualitative, quantitative, and mixed-methods studies • Language: Studies published in English. Exclusion Criteria • Studies not focused on SCD. • Studies that do not discuss barriers to care. • Non-peer-reviewed articles, opinion pieces, reviews and editorials. Timeframe No restrictions on the publication date. Data Extraction A standardized data extraction form will be developed by the team and will follow the Johanna Briggs Institute guidelines for data extraction for scoping reviews (Pollock et al. 2023). At the minimum the following information will be extracted from each study included study: • Study details (authors, year, country, study design) • Aims/purpose • Type of study • Methods • Population characteristics (age, gender, socioeconomic status) • Origin/country of origin (where the source was published or conducted) • Type of barriers identified • Context in which barriers occur • Proposed or implemented strategies to address barriers Data Analysis and Synthesis Data will be analysed using a thematic analysis. The findings will be presented in a narrative summary, supplemented by tables and charts to illustrate the types and frequency of barriers, as well as the contexts in which they occur. The results will be reported following the PRISMA Extension for Scoping Reviews (PRISMA-ScR)(Tricco et al. 2018) Ethics and dissemination This review was received a waiver from the UCT Faculty of Health Sciences Research Ethics Committee: The findings will be disseminated in a peer review publication and presentation at conferences. References Arksey, Hilary, and Lisa O'Malley. 2005. "Scoping studies: towards a methodological framework." International Journal of Social Research Methodology 8 (1):19-32. doi: 10.1080/1364557032000119616. Levac, Danielle, Heather Colquhoun, and Kelly K. O'Brien. 2010. "Scoping studies: advancing the methodology." Implementation Science 5 (1):69. doi: 10.1186/1748-5908-5-69. Pollock, Danielle, Micah D. J. Peters, Hanan Khalil, Patricia McInerney, Lyndsay Alexander, Andrea C. Tricco, Catrin Evans, Érica Brandão de Moraes, Christina M. Godfrey, Dawid Pieper, Ashrita Saran, Cindy Stern, and Zachary Munn. 2023. "Recommendations for the extraction, analysis, and presentation of results in scoping reviews." JBI Evidence Synthesis 21 (3). Tricco, A. C., E. Lillie, W. Zarin, K. K. O'Brien, H. Colquhoun, D. Levac, D. Moher, M. D. J. Peters, T. Horsley, L. Weeks, S. Hempel, E. A. Akl, C. Chang, J. McGowan, L. Stewart, L. Hartling, A. Aldcroft, M. G. Wilson, C. Garritty, S. Lewin, C. M. Godfrey, M. T. Macdonald, E. V. Langlois, K. Soares-Weiser, J. Moriarty, T. Clifford, Ö Tunçalp, and S. E. Straus. 2018. "PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation." Ann Intern Med 169 (7):467-473. doi: 10.7326/m18-0850.