Access to Specialized Care Services in the State of Amazonas: A Study of the Perceptions of Patients with Systemic Lupus Erythematosus

Abstract

Introduction: Access to specialist healthcare services has been a major challenge for the Unified Health System. In northern Brazil, the situation is even more acute for people with rare diseases, such as systemic lupus erythematosus. Objective: to analyze the vulnerability in access to specialist care experienced by patients with SLE in riverine communities in Amazonas and the Northern Region who seek treatment in Manaus, considering geographical factors, transport difficulties and their repercussions on patients’ health. Method: This is an exploratory, descriptive study using a qualitative approach, conducted with 32 patients treated at a rheumatology outpatient clinic in the city of Manaus, Amazonas. Data collection took place in June and July 2024, using non-probabilistic convenience sampling. Results: It was observed that in the Northern Region, access is more restricted due to geographical conditions, inefficiency in the implementation of public policies, a shortage of healthcare professionals, high demand and low supply, and the low income of service users. Consequently, patients face difficulties in obtaining medicines and incur increased costs for travel and accommodation, which leads to a rise in the number of patients discontinuing treatment and a worsening of the disease. Conclusion: The results show that the shortage of specialist care services, unfavorable geographical conditions and low-income hinder access to SLE treatment in the Northern Region, contributing to patients discontinuing treatment and the worsening of their clinical condition. It is concluded that the effective and equitable implementation of public policies is essential to reduce this regional inequality.