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Abstract Number: 0436

The Addressing Lupus Pillars for Health Advancement (ALPHA) Project: Establishing Consensus and Prioritization of Global Community Recommendations to Address Major Challenges in Lupus Diagnosis, Care, Treatment and Research

Karin Tse1, Sanjyot Sangodkar2, Kathleen Arntsen3, Sang-Cheol Bae4, Lauren Bloch2, Ian Bruce5, Erin Connolly-Strong6, Karen Costenbader7, Thomas Dörner8, Sydney Evans9, Timothy Franson2, Kenneth Getz10, Amy Kao11, Kenneth Kalunian12, Bradley Dickerson13, Susan Manzi14, Eric Morand15, Yaritza Peña10, Sandra Raymond16, Brad Rovin17, Laura Schanberg18, Joan Von Feldt19, Victoria Werth20, Angel Williams21, David Zook2 and Leslie Hanrahan16, 1Lupus Foundation of America, DC, WA, 2Faegre Drinker Consulting, Washington, DC, 3Lupus and Allied Diseases Association, Inc., Verona, NY, 4Department of Rheumatology, Hanyang University Hospital for Rheumatic Diseases, Seoul, Republic of Korea, 5Centre for Epidemiology Versus Arthritis, The University of Manchester and NIHR Manchester Biomedical Research Centre, Manchester University Hospitals NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, United Kingdom, 6Mallinckrodt, Austin, TX, 7Brigham and Women's Hospital and Harvard Medical School, Boston, MA, 8DRFZ and Charité University Hospitals, Berlin, Germany, 9Lupus Patient Representative, Riverdale, MD, 10Tufts Center for the Study of Drug Development, Boston, MA, 11EMD Serono (a business of Merck KGaA, Darmstadt, Germany), Billerica, MA, 12University of California San Diego, La Jolla, CA, 13Aurinia Pharmaceuticals, Fort Washington, PA, 14Lupus Center of Excellence, Autoimmunity Institute, Allegheny Health Network, Pittsburgh, PA, 15Medicine, School of Clinical Sciences at Monash Health, Monash University, Melbourne, Australia, 16Lupus Foundation of America, Washington, DC, 17The Ohio State University, Columbus, 18Duke University Medical Center, Durham, NC, 19GlaxoSmithKline, WILMINGTON, DE, 20University of Pennsylvania and the Michael J. Crescenz VA Medical Center, Philadelphia, PA, 21Lupus Patient Representative, Richmond, VA

Meeting: ACR Convergence 2020

Keywords: lupus-like disease, Qualitative Research, Surveys, Systemic lupus erythematosus (SLE)

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Session Information

Date: Friday, November 6, 2020

Session Title: Clinical Practice I (0434–0438)

Session Type: Abstract Session

Session Time: 4:00PM-4:50PM

Background/Purpose: The Addressing Lupus Pillars for Health Advancement (ALPHA) Project is a global consensus effort to identify, prioritize and address top barriers in lupus impacting diagnosis, care, treatment and research. Prior publications outlined mixed methodology of expert interviews and surveys to identify and prioritize barriers across drug development, clinical care and access to care among global lupus stakeholders including: clinicians, researchers, biopharmaceutical and government representatives, patients and caregivers.1,2 This abstract details methodology used to develop a roadmap of specific recommendations to address the barriers. 

Methods: An in-person stakeholder meeting of ALPHA Global Advisory Committee (GAC) members and a 2-round scoring survey were used to elicit recommendations. Prior to the meeting, held in Jan. 2020 in Washington, DC, GAC members (n=15) defined ‘success’ across drug development, clinical care and access to care using prior identified barriers as a framework. The meeting included 14 GAC members, 2 patients, an added clinician-researcher and Lupus Foundation of America and Tufts Center for the Study of Drug Development staff. Participants were divided into 3 breakout groups, with patient and specialty representation in each group, and identified at least 1 actionable solution to achieve ‘success’ per pillar. After full group discussion, participants voted on 1 top solution per pillar. Post-meeting, solutions were evaluated by feasibility, impact and timeline for implementation (FIT; Table 1). Each meeting participant completed 2 rounds of scoring in Qualtrics software. Potential FIT component values were between 1-3 and total scores between 3-9. Higher scores represent higher achievability based on the composite of the 3 criteria.

Results: Table 2 shows ranked solutions per pillar based on in-person voting, and Table 3 shows FIT scores. Simplifying and standardizing outcomes measures, such as steroid-sparing (drug development), and defining the lupus spectrum (clinical care) ranked as the highest priority solutions during the GAC meeting and received high FIT scores. Leveraging social media (access to care) received the highest FIT score across all pillars. Cross-cutting themes included leveraging digital technology and applying specific considerations for pediatric populations, as drug development has been limited and outcomes may differ from adults.

Conclusion: ALPHA has developed a roster of actionable solutions to barriers collectively impacting drug development, clinical care and access to care, and assessed achievability of each to improve the quality of life of adults and children with lupus. Simplifying and standardizing outcome measures, including steroid-sparing, may be pivotal to advance lupus drug development. Further clarifying the lupus spectrum may improve time to diagnosis and aid both provider and patient understanding of lupus. These findings are also an important indicator of patient preferences, highly relevant in patient-focused drug development.

References:

1Lupus Sci Med 2019;6:e000342. doi: 10.1136/lupus-2019-000342
2 Ann Rheum Dis, volume 79, supplement 1, year 2020, page 1953

Table 1. Feasibility, Impact, and Timeline (FIT) Scoring Guide

Table 2. Ranked Solutions per Pillar Identified During GAC In-Person Meeting

Table 3. Feasibility, Impact, and Timeline Scoring Results, Listed by Highest Average Score


Disclosure: K. Tse, Lupus Foundation of America, 3; S. Sangodkar, Faegre Drinker Consulting, 3; K. Arntsen, None; S. Bae, None; L. Bloch, Faegre Drinker Consulting, 3; I. Bruce, Genzyme/Sanofi, 2, GlaxoSmithKline, 2, 5, 8, Roche, 2, UCB, 2, 5, 8, Eli Lilly, 5, Merck Serono, 5, ILTOO, 5, AstraZeneca, 8; E. Connolly-Strong, Mallinckrodt, 3; K. Costenbader, Glaxo Smith Kline, 5, UpToDate, 7, Lupus Foundation of America, 6, Neutrolis Inc, 5; T. Dörner, Eli Lilly and Company, 2, 5, Roche, 2, 5, Sanofi, 2, 5, Novartis, 2, 5, Abbvie, 2, 5, Celgene, 5, Pfizer Corporation, 2; S. Evans, None; T. Franson, Faegre Drinker Consulting, 3; K. Getz, None; A. Kao, EMD Serono (a business of Merck KGaA, Darmstadt, Germany), 1, 3; K. Kalunian, Roche, 5, Biogen, 5, Janssen, 5, AstraZeneca, 5, Lupus Research Alliance, 2, Pfizer, 2, Sanford Consortium, 2, Eli Lilly, 5, Genetech, 5, Gilead, 5, ILTOO, 5, Nektar, 5, Viela, 5, Equillium, 5, Bristol-Meyers Squibb, 5; B. Dickerson, Aurinia, 3; S. Manzi, AstraZeneca, 2, 5; E. Morand, AstraZeneca, 2, 5, 8, Bristol-Myers Squibb, 2, 5, Eli Lilly, 2, 5, GlaxoSmithKline, 2, 5, Janssen, 2, 5, Merck Serono, 2, 5, Neovacs, 5, Sandoz, 5, Novartis, 8, AbbVie, 5, Amgen, 5, Biogen, 5; Y. Peña, None; S. Raymond, Lupus Foundation of America, 3; B. Rovin, GSK, 1, Aurinia, 5, AstraZeneca, 5, Novartis, 5, Alexion, 5, Bristol-Myers Squibb, 5; L. Schanberg, UCB, 1, Sanofi, 1, BMS, 1, Sobi, 1, 2; J. Von Feldt, GlaxoSmithKline, 1, 3; V. Werth, Biogen, 2, 5; A. Williams, None; D. Zook, Faegre Drinker Consulting, 3; L. Hanrahan, None.

To cite this abstract in AMA style:

Tse K, Sangodkar S, Arntsen K, Bae S, Bloch L, Bruce I, Connolly-Strong E, Costenbader K, Dörner T, Evans S, Franson T, Getz K, Kao A, Kalunian K, Dickerson B, Manzi S, Morand E, Peña Y, Raymond S, Rovin B, Schanberg L, Von Feldt J, Werth V, Williams A, Zook D, Hanrahan L. The Addressing Lupus Pillars for Health Advancement (ALPHA) Project: Establishing Consensus and Prioritization of Global Community Recommendations to Address Major Challenges in Lupus Diagnosis, Care, Treatment and Research [abstract]. Arthritis Rheumatol. 2020; 72 (suppl 10). https://acrabstracts.org/abstract/the-addressing-lupus-pillars-for-health-advancement-alpha-project-establishing-consensus-and-prioritization-of-global-community-recommendations-to-address-major-challenges-in-lupus-diagnosis-care/. Accessed July 2, 2022.
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