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Systemic lupus erythematosus (SLE) can cause clinical manifestations, including skin lesions, inflammation around the lungs and heart, nephritis, and/or hematologic, neuropsychiatric, and gastrointestinal disorders.1 Patients with SLE experience significant disease burden because of active disease and treatment-related morbidity; patient-reported outcome studies have also reported the considerable effect of lupus on perception of health, daily activities, and disability.2
In this interview, Patricia Cagnoli, MD, a rheumatologist at the University of Michigan, Ann Arbor, and a steering committee member of A Vision of Lupus initiative, describes the highlights of the initiative and the calls to action developed in the report to address existing gaps and inconsistencies in lupus care.3
Could you give us an overview of the initiative, A Vision for Lupus?
Globally, approximately 5 million people have lupus. The prevalence of the condition is thought to be increasing, supporting the idea that lupus is no longer a rare disease. In the United States, there are about 1.5 million Americans living with lupus.4 Although there have been significant developments in lupus management in recent years, challenges still exist. GlaxoSmithKline wanted to raise awareness of the current gaps and inconsistencies in lupus, so A Vision for Lupus was conceived and developed in collaboration with a global multidisciplinary steering committee. The goal of the initiative is to raise the global voice of lupus and improve care for patients living with the chronic inflammatory autoimmune disease.
As a part of this initiative, we developed a report for A Vision for Lupus that discusses where we want to be in the future and suggests patient-centered calls to action.
Although the original report identified gaps and consistencies in lupus care worldwide, we decided it was important to develop country-specific reports. The addendum examines the unique challenges that patients with lupus face in the United States.
What are the current unmet needs in lupus that need to be addressed in the United States?
One of the most pressing unmet needs in lupus is the widespread lack of understanding of the condition. Of the 1.5 million Americans who have some form of lupus, approximately 90% of them are women, most often of childbearing age (aged 15-45 years). In the United States, lupus is ranked among the top 20 leading causes of death among women.4
Despite this prevalence, the Lupus Foundation of America found that more than half of Americans (63%) have not heard of lupus, with only 16% reporting that they were familiar with lupus and understood its symptoms.5 We hope that A Vision for Lupus will raise awareness about lupus among the general public, patients with lupus and their families, and healthcare providers.
What are the gaps in lupus that A Vision for Lupus aims to bridge?
The primary gaps that A Vision for Lupus initiative aims to bridge are awareness, service delivery, and research. In the report, we outlined 3 important calls to action to help address these gaps, as well as examples on how these calls to action can help improve patient care:
1. Raise awareness of lupus among the general public, patients with lupus and their families, and healthcare providers to help achieve early diagnosis and help patients with lupus feel more acknowledged, understood, and supported. Cultivate a group of public figures, including celebrities and medical professionals, who are willing to talk about the condition to raise awareness of lupus.
2. Improve access to specialist and multidisciplinary lupus clinics to address all aspects of this complex, multisystem disease. Use specialist lupus triage nurses to take a leading role in exploring what matters most to the patient: therapeutic education and linking to further services to improve service delivery and access to specialist and multidisciplinary lupus clinics.
3. Raise awareness of ongoing clinical trials to facilitate access to research participation and involve patients in the study design of lupus clinical trials to ensure they address the aspects of the disease that matter most to patients. Provide education about clinical research opportunities for patients at specialist centers to improve awareness of ongoing clinical trials.
How can clinicians help in improving the quality of care in patients with lupus?
The most critical action clinicians can take is to raise awareness. We encourage clinicians to disseminate information gathered by lupus initiatives to their patients so the report’s findings are better able to reach the people who could benefit from them the most. Clinicians can also encourage patients to participate in registries and symptom libraries, so they become more comfortable with the concept of research and more open to participating in clinical trials.
As a physician who treats patients with lupus, I would say the most important finding of the A Vision for Lupus Report was the lack of access to rheumatologists in much of the United States. There is misdistribution of rheumatologists, with the majority practicing in metropolitan areas.6 Geography and transport infrastructure in the United States means patients with lupus may have to travel long distances to appointments: they may drive up to 8 hours to see rheumatologists for a very short appointment. Longer distance and travel time to medical appointments are associated with negative outcomes, such as missed appointments, increased pressure at appointments, or discontinuation of medications.
What is the future direction of lupus research? Is there any research in the pipeline for this initiative?
Lupus research is a dynamic process, and research direction is as heterogenous as the disease itself. The areas of interest include finding the cause of this disease, pediatric lupus, health services research, and improving diagnostic tools and treatment.
Are there any goals or targets for World Lupus Day 2020?
There are no specific targets for 2020 at this time. World Lupus Day was established in 2004 to raise awareness of the disease and its effect on patients, with the aim of improving the quality of life for patients affected by this potentially fatal disease. A Vision for Lupus Report highlights the need for improvement in diagnosis and importance of clinical research in lupus. Moving forward into 2020, we continue to address these calls to action to help raise the voice of the lupus patient community.
Disclosure: Patricia Cagnoli, MD, declared affiliations with GlaxoSmithKline.
References
1. da Hora TC, Lima K, Maciel RRBT. The effect of therapies on the quality of life of patients with systemic lupus erythematosus: a meta-analysis of randomized trials. Adv Rheumatol. 2019;59(1):34.
2. Golder V, Morand EF, Hoi AY. Quality of care for systemic lupus erythematosus: mind the knowledge gap. J Rheumatol. 2017;44(3):271-278.
3. GlaxoSmithKline plc. A Vision for Lupus. https://www.visionforlupus.org/. November 2019. Accessed February 14, 2020.
4. Lupus Foundation of America. Lupus facts and statistics. https://www.lupus.org/resources/lupus-facts-and-statistics. October 6, 2016. Accessed February 14, 2020.
5. Lupus Foundation of America. Lupus Foundation of America survey: more than half of Americans lack awareness, understanding of lupus. https://www.lupus.org/news/lupus-foundation-of-america-survey-more-than-half-of-americans-lack-awareness-understanding-of-lupus. Published May 1, 2019. Accessed February 18, 2020.
6. Battafarano DF, Ditmyer M, Bolster MB, et al. 2015 American College of Rheumatology Workforce study: supply and demand projections of adult rheumatology workforce, 2015-2030. Arthritis Care Res. 2018;70(4):617-626.
