Age-related macular degeneration and resource utilization in the Brazilian public healthcare system: a real-world retrospective study

Abstract

Background Age-related macular degeneration (AMD) is a disease that causes damage in the macular region of the retina, leading to irreversible blindness. This study aims to understand the profile and care of patients with AMD and its cost at the Brazilian public health system to identify AMD-care needs. Methods This is a retrospective observational study of AMD with real-world data from the Brazilian public healthcare system, using DATASUS claim databases. Patients with AMD were selected from 01/Jan/2014 to 31/Jan/2020; had at least one claim of ICD10 code H35.3 (Degeneration of macula and posterior pole), and were submitted to one of two procedures exclusively available for AMD patients - optical coherence tomography (OCT) and medical treatment of retinal disease (antiangiogenic); aged ≥18 years at first ICD10 claim, and presenting at least 1 year of follow-up in the database. We described patients’ characteristics, healthcare resource utilization and cost, and the antiangiogenic intravitreal treatment received by AMD patients, including the number of doses and interval time between them. Results Patients searching for AMD treatment since 2014 were mostly females (59%), white (61%), and a mean age of 72 years. They were mainly located in the Southeast (87%), and few patients were found in the North (1%) and Central-West (1.5%) regions, probably reflecting where the Brazilian guideline to treat AMD (Protocolo Clínico e Diretrizes Terapêuticas - PCDT) was incorporated as routine care for AMD. The average antiangiogenic dose of 2.5 antiangiogenic therapies within a year was below the expected. Most injections had an interval time of 20 to 40 days between doses, although some patients were treated more than 100 days. Another setback is that patients traveled longer distances for OCT and antiangiogenic treatment than overall AMD-healthcare, between 10 and 100 km. Conclusions AMD patients seem to be undertreated, as they receive a mean of 2.5 doses of antiangiogenic treatment within a year. Inequalities among regions are evident, as the Southeast and South regions comprise almost all patients receiving the treatment from the public health system, probably reflecting the region with more access to AMD care according to PCDT recommendations.

Real-world treatment patterns of rheumatoid arthritis in Brazil: analysis of DATASUS national administrative claims data for pharmacoepidemiology studies (2010–2020)

“…The study cohort had a median age of 55 years, mostly female (82.8%), and white (57.7%). The characteristics of our cohort corroborated findings from earlier studies in Brazil 14 , 22 , 28 , 29 . Results from the REAL study (2020) of 1115 patients with RA treated at 11 public (SUS) centers across Brazil reported a median age of 56.6 years, 89.5% female, and 58.6% white 29 .…”

“…Rheumatoid arthritis (RA) is a chronic, immune-mediated inflammatory disease affecting with a global prevalence of 460 per 100,000 (0.46%; 95% prediction interval [0.06–1.27]) 16 , and a prevalence rate of 200–1000 per 100,000 in Brazil 17 , 18 . DATASUS has been used for studies examining patient characteristics and patterns of treatment in other chronic conditions such as multiple sclerosis 19 , spinal muscular atrophy 20 , breast cancer 21 , and age-related macular degeneration (AMD) 22 .…”

Evaluating Brazil’s national administrative claims data for real-world pharmacoepidemiologic studies: Trends in rheumatoid arthritis using DATASUS (2010–2020)

“…The characteristics of our cohort corroborated ndings from earlier studies in Brazil. [11,19,25,26] Results from the REAL study (2020) of 1,115 patients with RA treated at eleven public (SUS) centers across Brazil reported a median age of 56.6 years, 89.5% female, and 58.6% white.…”

“…[29] In Brazil, pharmacoepidemiology research faces challenges, not from a lack of data, but rather from the lack of data integration and linked databases within SUS to ensure complete capture of the disease journey. [30] As with similar approaches outside of Brazil,[6, 14,15,17,19] health record linkage methods were used to bridge data at the patient level across in-patient and out-patient data sets, thereby ensuring the longitudinal data capture across these settings to capture the full patient journey in RA. [18,30] Although, DATASUS has the advantage in capturing information from SUS comprehensive public health system, between 22-25% of the Brazilian population has supplementary health insurance.…”

“…[14,15] DATASUS has been used for studies examining patient characteristics and patterns of treatment in other chronic conditions such as multiple sclerosis,[16] spinal muscular atrophy, [17] breast cancer, [18] and age-related macular degeneration (AMD). [19] This study aimed to evaluate DATASUS as a relevant and reliabledata source for the conduct of pharmacoepidemiologic studies in the RA population of Brazil. Among the various treatment options are available within SUS, we focused on treatment patterns associated with disease-modifying antirheumatic drug (DMARDs), immunosuppressive and immunomodulatory interventions classi ed as conventional synthetic (cs), biologic (b) or targeted synthetic (ts) DMARDs.…”