I44 Lupus and minorities – Economically/socially less advantaged people living with systemic lupus erythematosus

Objective Living with Systemic Lupus Erythematosus (SLE) is a complex, chronic endeavour, involving patients, social support networks and healthcare systems. In Portugal, all SLE patients have access to National Health Service (SNS) resources – appointments, admissions and SLE-related medication, including biologics – free of charge. Despite this, immense barriers to optimal care remain, particularly for economically and/or socially less advantaged populations, potentially worsening outcomes. These broadly defined situations are mostly context-specific and require tailored approaches. Methods Several challenges, based on the author's own practice, will be shared to raise awareness and discuss pathways for improvement. Results Travel burden and access. Public transport networks are less developed outside of urban centres. As many as half of the author's patients live in places without public transport to the hospital (per Google Maps). Without personal or public transportation, especially when elderly and living alone, many resort to paid private services, at personal expense, in a country with comparatively low mean salary and pensions. Our hospital centre has implemented outreach appointments at another building to increase proximity. Management of risk factors and comorbidities. Low health literacy compounds problems caused by SLE with higher risk of alcohol, smoking and substance abuse, as well as reduced absence of healthy habits. Most of the author's patients self-report not exercising or consistently using photoprotection, for instance. Understanding medication and compliance SLE patients often require numerous medications. The author reviews medication on every visit, but is (soft-)limited by an appointment time of 20 minutes. A majority of patients do not know all medication, nor bring a list or the drugs themselves. We record whenever the drugs or list was physically reviewed and are trying to implement nurse-lead review at regular intervals. Low literacy levels, particularly in more rural areas, compound this problem. In 2021, 2,8% of population in Portugal cannot read/write and 20% counted only four years of formal education. Local pharmacies play a key role in point-of-care medication review and training. Electronic prescriptions help standardize the information. However, there is no quality control, or even assurance of a close pharmacy. Complex management coordination Most patients have more than one specialized appointment. Some are followed in more than one institution, including private ones. Referrals are made electronically and replies occur at different times. All this sometimes results in confusion for the patient in understanding the purpose of each appointment. Information is essential for safe care, but is often inaccessible or incomplete. Ideally, patients would serve as vehicles and certifiers of their own health data. Low levels of health literacy in particular, prevent patients from assuming an effective role. Initiatives by patient organizations and doctor associations, for instance, are essential for outreach and improvement, but events are limited and far between. Education and participation Most of the author's patients, when asked, say they do not lookup information on their disease online. Those who do, acknowledge a lack of good sources in Portuguese. What information there is is lead by millions of speakers in Brazil (different context), with an outsized effect on social media, where information is often unverified. Lack of information does not lead to increased participation. Most of the author's patients have never joined SLE-specific events. This reinforces a vicious cycle that limits the quality of care and management that might be achievable. By organizing regular visits on specific days for all our Lupus patients, we hope to increase interaction and sharing of experiences. The hospital context, however, is not ideal nor sufficient. Conclusions Much like new treatments, care pathways for SLE patients need to be personalized. Different socio-economic and cultural contexts require different approaches and no single measure will fit all conditions. SLE management extends beyond physician-patient appointments and physician-directed management. Objectives and quality indicators must embrace the entire patient care pathway and interactions. Information and decision processes should be brought to a less centralized, more local level, involving not only patients and medical doctors but all other healthcare professionals, patient associations, representatives, supporters and society at large. Acknowledgements Prof Carlos Vasconcelos, Dr Natália Oliveira and Dr Maria Teresa Boncoraglio for continued support and comments. Dr Lindora Pires, Director, Internal Medicine Service, ULSTS. DGO is funded by a doctoral research grant by FCT – Fundação para a Ciência e Tecnologia.