RT Journal Article
SR Electronic
T1 The ALPHA Project: Establishing consensus and prioritisation of global community recommendations to address major challenges in lupus diagnosis, care, treatment and research
JF Lupus Science & Medicine
JO Lupus Sci Med
FD Lupus Foundation of America
SP e000433
DO 10.1136/lupus-2020-000433
VO 8
IS 1
A1 Karin Tse
A1 Sanjyot Sangodkar
A1 Lauren Bloch
A1 Kathleen Arntsen
A1 Sang-Cheol Bae
A1 Ian N Bruce
A1 Erin Connolly-Strong
A1 Karen H Costenbader
A1 Bradley Dickerson
A1 Thomas Dörner
A1 Sydney Evans
A1 Kenneth Kalunian
A1 Amy H Kao
A1 Susan Manzi
A1 Eric F Morand
A1 Sandra C Raymond
A1 Brad H Rovin
A1 Laura Eve Schanberg
A1 Joan M Von Feldt
A1 Victoria P Werth
A1 Angel Williams Derricott
A1 David Zook
A1 Timothy Franson
A1 Kenneth Getz
A1 Yaritza Peña
A1 Leslie M Hanrahan
A1 ,
YR 2021
UL http://lupus.bmj.com/content/8/1/e000433.abstract
AB 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.