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      The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research

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          The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritise and address top barriers in lupus impacting diagnosis, care, treatment and research. To conduct this process, the ALPHA Project convened a multistakeholder Global Advisory Committee (GAC) of lupus experts and collected input from global audiences, including patients. In phase I, the ALPHA Project used expert interviews and a global survey of lupus experts to identify and categorise barriers into three overarching pillars: drug development, clinical care and access to care. In phase II, reported here, the GAC developed recommended actionable solutions to address these previously identified barriers through an in-person stakeholder meeting, followed by a two-round scoring process. Recommendations were assessed for feasibility, impact and timeline for implementation (FIT), where potential FIT component values were between 1 and 3 and total scores were between 3 and 9. Higher scores represented higher achievability based on the composite of the three criteria. Simplifying and standardising outcomes measures, including steroid sparing as an outcome (drug development) and defining the lupus spectrum (clinical care) ranked as the highest two priority solutions during the GAC meeting and received high FIT scores (7.67 and 7.44, respectively). Leveraging social media (access to care) received the highest FIT score across all pillars (7.86). Cross-cutting themes of many solutions include leveraging digital technology and applying specific considerations for special populations, including paediatrics. Implementing the recommendations to address key barriers to drug development, clinical care and access to care is essential to improving the quality of life of adults and children with lupus. Multistakeholder collaboration and guidance across existing efforts globally is warranted.

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          Most cited references 12

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          Disparities in lupus care and outcomes.

          Systemic lupus erythematosus (SLE), an inflammatory rheumatic disease characterized by autoantibody production and diverse clinical manifestations, disproportionately affects vulnerable groups: women, racial and ethnic minorities, the poor and those lacking medical insurance and education. We summarize the current knowledge of the disparities observed in SLE and highlight recent research that aims to dissect the causes of these disparities and identify the potentially modifiable factors contributing to them. Several remediable causes, including lack of education, self-efficacy and access to quality, experienced healthcare have been found to contribute to observed disparities in SLE prevalence and outcomes. SLE is associated with alarming disparities in incidence, severity and outcomes. The causes of these disparities are under study by several research groups. Identifying potentially correctable contributory factors should allow the development of effective strategies to improve the healthcare delivery and outcomes in all SLE patients.
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            The global burden of SLE: prevalence, health disparities and socioeconomic impact.

            Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease that can potentially lead to serious organ complications and even death. Its global burden - in terms of incidence and prevalence, differential impact on populations, economic costs and capacity to compromise health-related quality of life - remains incompletely understood. The reported worldwide incidence and prevalence of SLE vary considerably; this variation is probably attributable to a variety of factors, including ethnic and geographic differences in the populations being studied, the definition of SLE applied, and the methods of case identification. Despite the heterogeneous nature of the disease, distinct patterns of disease presentation, severity and course can often be related to differences in ethnicity, income level, education, health insurance status, level of social support and medication compliance, as well as environmental and occupational factors. Given the potential for the disease to cause such severe and widespread organ damage, not only are the attendant direct costs high, but these costs are sometimes exceeded by indirect costs owing to loss of economic productivity. As an intangible cost, patients with SLE are, not surprisingly, likely to endure considerably reduced health-related quality of life.
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              Medicaid and access to care among persons with systemic lupus erythematosus.

              To evaluate the associations between Medicaid insurance and distance traveled by patients to treating physicians and health care utilization for patients with systemic lupus erythematosus (SLE). A total of 982 adults with SLE were recruited between 2002 and 2004. We calculated the distance between patient homes and physicians using Mapquest, an Internet mapping program. We then assessed the association between Medicaid status and distance traveled to the primary SLE provider, presence of > or =1 physician visits, and the number of all physician visits, with and without adjustment for demographic and medical covariates. On an unadjusted basis, Medicaid patients traveled longer distances to see their primary SLE provider. This effect was pronounced for patients under the care of a rheumatologist. Adjustment reduced, but did not eliminate, these differences. With adjustment for covariates, Medicaid patients were equally as likely to see a rheumatologist as non-Medicaid patients. However, Medicaid patients were more likely to be seen by a general practitioner or in the emergency room for their SLE, and reported more visits to general practitioners and the emergency room for SLE. Medicaid patients with SLE traveled longer distances to see an SLE physician, especially rheumatologists. They also reported a different pattern of health care utilization. These results suggest that Medicaid patients may face barriers in obtaining comprehensive medical services in proximity to their residences.

                Author and article information

                Lupus Sci Med
                Lupus Sci Med
                Lupus Science & Medicine
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                9 February 2021
                : 8
                : 1
                [1 ]departmentResearch , Lupus Foundation of America Inc , Washington, District of Columbia, USA
                [2 ]departmentFaegre Drinker Consulting , Faegre Drinker Biddle and Reath LLP , Washington, DC, USA
                [3 ]Lupus and Allied Diseases Association, Inc , Verona, New York, USA
                [4 ]departmentRheumatology , Hanyang University Seoul Hospital , Seongdong-gu, Seoul, South Korea
                [5 ]NIHR Manchester Biomedical Research Centre , Manchester, UK
                [6 ]departmentMusculoskeletal and Dermatological Sciences , The University of Manchester , Manchester, UK
                [7 ]departmentAutoimmune and Rare Disease Division , Mallinckrodt Pharmaceuticals Specialty Brands , Bedminster, New Jersey, USA
                [8 ]departmentMedicine , Brigham and Women's Hospital , Boston, Massachusetts, USA
                [9 ]Aurinia Pharmaceuticals Inc , Victoria, British Columbia, Canada
                [10 ]departmentRheumatology and Clinical Immunology , Charite University Hospital Berlin , Berlin, Germany
                [11 ]Patient Representative , Riverdale, Maryland, USA
                [12 ]departmentMedical Center , University of California San Diego , La Jolla, California, USA
                [13 ]EMD Serono Research and Development Institute , Billerica, Massachusetts, USA
                [14 ]departmentMedicine , Allegheny Health Network , Pittsburgh, Pennsylvania, USA
                [15 ]departmentRheumatology , Monash University , Clayton, Victoria, Australia
                [16 ]departmentInternal Medicine/Nephrology , The Ohio State University Wexner Medical Center , Columbus, Ohio, USA
                [17 ]departmentPediatrics , Duke University Medical Center , Durham, North Carolina, USA
                [18 ]GlaxoSmithKline USA , Philadelphia, Pennsylvania, USA
                [19 ]departmentDermatology , University of Pennsylvania , Philadelphia, Pennsylvania, USA
                [20 ]Corporal Michael J Crescenz VA Medical Center , Philadelphia, Pennsylvania, USA
                [21 ]Patient Representative , Richmond, Virginia, USA
                [22 ]departmentFaegre Drinker Consulting , Faegre Drinker Biddle and Reath LLP , Indianapolis, Indiana, USA
                [23 ]departmentCenter for the Study of Drug Development , Tufts University School of Medicine , Boston, Massachusetts, USA
                Author notes
                [Correspondence to ] Karin Tse; karinstse@ 123456gmail.com
                © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                Funded by: FundRef http://dx.doi.org/10.13039/100014468, Mallinckrodt Pharmaceuticals;
                Award ID: N/A
                Funded by: FundRef http://dx.doi.org/10.13039/100004330, GlaxoSmithKline;
                Award ID: N/A
                Funded by: Aurinia Pharmaceuticals;
                Award ID: N/A
                Funded by: EMD Serono Research & Development Institute, Inc. (a business of Merck KGaA, Darmstadt, Germany);
                Award ID: N/A
                Epidemiology and Outcomes
                Original research
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