What do you think are the main challenges to access and care for lupus patients?

Access to care for lupus patients presents a number of challenges, mainly due to the complexity of the disease and its polymorphous manifestations (“the disease of a thousand faces”). Many patients find it difficult to obtain a rapid diagnosis, as lupus symptoms can be aspecific or mimic those of other conditions. A recent meta-analysis of all published studies to date on that theme revealed that the median diagnosis delay for lupus worldwide is around two years. An important contributor to this is the fact that geographical disparities and a limited workforce can hamper access to specialists, including rheumatologists. In addition, financial barriers, including the cost of treatment and inadequate insurance coverage in some countries, can limit access to necessary medication and laboratory tests for some patients. Finally, raising awareness of lupus among healthcare providers and the public is also key to improving patient outcomes and ensuring more equitable care.

How can patient support groups help in improving patient care?

Patient support groups play a crucial role in improving lupus management, as they create a sense of community and provide emotional support and specific information to new patients. Members can share personal experiences, coping strategies and valuable information on symptom management and treatment options. This exchange of knowledge can enable patients to become more proactive in their healthcare, improve adherence to treatment plans, and enhance communication with healthcare providers. In addition, support groups and patient associations can advocate patient needs and promote greater awareness within the healthcare system.

What is the role of teleconsultation services in improving and facilitating patient care? 

In theory, digital health and teleconsultation services can play an important role in improving patient care by providing accessible healthcare solutions and reducing travel times and waiting periods, which is crucial in the context of rare diseases. This is especially important for people living in rural or underserved areas. In addition, digital health tools can enable better management of chronic diseases such as SLE through Patient Reported Outcomes (PROs) monitoring and personalized health interventions (‘digital therapies’). However, it is important to acknowledge that integrating digital healthcare into routine SLE care currently remains a challenge, and many of these prospects remain challenges for years to come.

Regarding lupus care, are there certain challenges that are unique to each country?

Yes, treating lupus presents specific challenges that can vary considerably from country to country. In particular, access to specialized care and medications can be hampered by healthcare costs and disparities in insurance coverage, as well as, in some countries, limited healthcare infrastructure and a lack of lupus awareness. Importantly, cultural beliefs and health knowledge can also influence patient adherence to treatment. Therefore, while there are common themes in lupus care globally, each country’s unique socio-economic, cultural, and healthcare contexts pose specific challenges. We have just launched an international study called STRIDE, which aims to map lupus care worldwide. In this context,I am delighted to welcome Dr Vinod Ravindran as a member of the STRIDE steering committee.

What are the 3 most important measures to improve outcomes in SLE? 

I believe there are three main measures to improve lupus outcomes, including early and accurate diagnosis, access to treatment, and finally ongoing patient education with holistic support. Early diagnosis enables prompt treatment, which is essential for managing symptoms and preventing organ damage. Access to more efficacious treatment is essential to improve outcomes. Finally, patient education and holistic support enable individuals to understand their disease, adhere to treatment regimens and adopt a healthy lifestyle. Together, these measures can significantly improve lupus sufferers’ quality of life and long-term health outcomes.