A meeting report published by Bruce et al in Lupus Science & Medicine outlined discussions and conclusions from a series of virtual talks with members of the Addressing Lupus Pillars for Health Advancement (ALPHA) Project clinical care team, an initiative from the Lupus Foundation of America focused on identifying and prioritizing challenges for patients with lupus and creating actionable solutions. Members from the ALPHA project met to discuss the difficulties sometimes encountered in diagnosing lupus, including nonspecific signs and symptoms as well as a lack of diagnostic criteria and referral pathways for nonspecialists. The group found, through analysis of patient survey data, literature reviews, and patient testimonials, that 27% to 37% of patients with lupus are diagnosed within 1 year of symptom onset, but one-third are diagnosed after 5 years, with 2 years being the median reported delay. In one survey from the UK, 47% of respondents reported being initially misdiagnosed. These delays can lead to worse patient outcomes, including poor symptom control and premature death. As a result, the group recommends moving to a spectrum definition of lupus for diagnosis, which “may help bridge knowledge gaps related to diagnoses, reduce time to diagnosis, and lessen the overall burden on the patient,” according to the study authors.
In a companion press release from the Lupus Foundation of America, next steps to moving toward a spectrum definition would be to:
- Leverage professional networks of medical associations to implement provider training, share relevant updates, and improve clinical referral processes
- Use emerging research and work with the U.S. Food and Drug Administration and other global regulatory health agencies to consider the expansion of the definition of lupus for drug development efforts
- Consult with and build consensus among stakeholder groups across the lupus global landscape
- Conduct additional research on the natural history of lupus and in-depth biomarker studies.