RESUMEN
BACKGROUND: Over 34 million people in the United States have diabetes, with 1.5 million diagnosed every year. Diabetes self-management education and support (DSMES) is a crucial component of treatment to delay or prevent complications. Rural communities face many unique challenges in accessing DSMES, including geographic barriers and availability of DSMES programs that are culturally adapted to rural context. OBJECTIVE: Boot Camp Translation (BCT) is an established approach to community-based participatory research used to translate complex clinical and scientific information into concepts, messages, and materials that are understandable, meaningful, and relevant to community members and patients. This study aimed to utilize BCT to adapt an existing DSMES program for delivery in rural primary care for English- and Spanish-speaking people with diabetes. METHODS: The High Plains Research Network (HPRN) Community Advisory Council (C.A.C.) partnered with researchers at the University of Colorado and University of Utah to use BCT to aid in translating medical jargon and materials from an existing DSMES program, called "Diabetes One Day (D1D)." BCT consisted of 10 virtual meetings over a 6-month period among the C.A.C., which included 15 diverse community stakeholders. Both English-speaking and bilingual Spanish-English-speaking C.A.C. members were recruited to reflect the diversity of the rural communities in which the adapted program would be delivered. RESULTS: The BCT process guided adaptations to D1D for use in rural settings (R-D1D). R-D1D adaptations reflect both content and delivery to assure that the intervention is appropriate and likely to be accepted by rural English- and Spanish-speaking people with diabetes. Additionally, BCT informed the design of recruitment and program materials and identification of recruitment venues. During the BCT process, the importance of tailoring materials to reflect culture differences in English- and Spanish-speaking patients was identified. CONCLUSIONS: BCT was an effective strategy for academic researchers to partner with rural community members to adapt an existing DSMES intervention for delivery in rural areas to both English- and Spanish-speaking patients with diabetes. Through BCT, adaptations to recruitment materials and methods, program content and delivery, and supplemental materials were developed. The need to culturally adapt Spanish materials with input from stakeholders rather than simply translate materials into Spanish was highlighted. The importance of increasing awareness of the connection between diabetes and depression or diabetes distress, adaptations to include local foods, and the importance of the relationship between people with diabetes and their primary care practices were identified.
RESUMEN
BACKGROUND: Human T-cell lymphotropic virus type 1 (HTLV-1) is the etiological agent of HTLV associated myelopathy/ Tropical Spastic Paraparesis (HAM/TSP) and Adult T cell leukemia/lymphoma (ATLL), in around 2-5% of the infected individuals. Host genetic background might play a role in disease progression. Several previous studies across many countries report HLA haplotype to be one such factor. Here, we sequenced HLA-A, -B and -C of 66 individuals by Sequence-Based Typing (SBT), and compared the frequency of different alleles among ATLL patients, HAM/TSP patients, asymptomatic carriers and non-infected individuals living in Argentina. RESULTS: The frequency of HLA-A, -B and -C alleles largely matched that of the general population in Argentina. We identified HLA-A*02, HLA-B*35 and HLA-C*07 as associated to protection from ATLL (p = 0.031), susceptibility to HAM/TSP (p < 0.001) and susceptibility to ATLL (p = 0.017), respectively. We also found a strong correlation between high proviral load (PVL) and disease (p = 0.008), but were unable to identify any particular allele associated with high or low PVL. CONCLUSIONS: We have found HLA-A*02, HLA-B*35 and HLA-C*07 to be associated to protection from ATLL (HLA-A*02) and susceptibility to HAM/TSP (HLA-B*35) or to ATLL (HLA-C*07), respectively. Whereas HLA-A*02 protection from ATLL has already been extensively described in other regions of the world, this is the first report that links HLA-B*35 and an increased susceptibility to HAM/TSP. As for HLA-C*07 it has previously been associated to susceptibility to HAM/TSP in other countries but in our population it has been linked to ATLL.