Healthcare resource utilization of spinal muscular atrophy in the Brazilian Unified Health System: a retrospective database study

Abstract

Objective: To describe the healthcare resource utilization (HCRU) related to patients with spinal muscular atrophy (SMA) treated at the Brazilian Unified Health System (SUS) since 2015 according to age-groups. Methods: This study analyzed outpatient and inpatient data for SMA patients from the Brazilian Unified Health System database (DATASUS) from January 2015 to September 2020. Data were collected from patients with ICD-10 codes G12.0 (Infantile spinal muscular atrophy, type I [Werdnig-Hoffman]) or G12.1 (Other inherited spinal muscular atrophy), plus with at least one claim of nusinersen OR at least one claim of any SMA-related procedure groups codes since 2010. SMA-related procedures were defined based on collaborative work involving authors from medical boarding composed by physicians from SUS. Results: In total, 3,775 patients with SMA fulfilled the eligibility criteria. Physiotherapy changed from 11.34 (2.49 – 24.40) procedures PPPY in the 0 - 6-month old group to 3.30 (0.84 – 11.76) procedures PPPY in the > 36-month old group. The median of orthosis was 1.64 (0.66 – 3.41) procedures PPPY in the 0 – 6-month old group and 0.63 (0.34 – 1.33) PPPY in the > 36-month-old group. Exams were primarily performed for younger groups (0 – 6 months and > 6 – 18 months). The percentage of patients that needed some ventilatory care seems greater, and the speech therapy and the use of nusinersen seem lower along with age. Conclusion: This study has demonstrated important HCRU at the SUS setting with SMA patients. In addition, our results highlight the need to implement evidence-based strategies to manage SMA patients and drive cost savings for the health care system

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

“…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 33 . As with similar approaches outside of Brazil 9 , 17 , 18 , 20 , 22 , 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 21 , 33 . Although, DATASUS has the advantage in capturing information from SUS comprehensive public health system, between 22 and 25% of the Brazilian population has supplementary health insurance 14 , 15 , 34 .…”

“…As with other health insurance administrative claims databases, DATASUS has the potential to be a valuable source of real-world data when handled with pharmacoepidemiologic principles of scientific study design and analyses. Often regarded as the foundation for pharmacoepidemiologic research, claims data are used for post-marketing drug surveillance, cost-effectiveness evaluations, and when evaluating preventive therapeutic strategies 10 , 20 , 43 . Our analyses of DATASUS provided insights on the treatment patterns relevant to individuals living with RA in Brazil that may contribute to a more accurate prediction of future healthcare planning, helping to adapt the Brazilian healthcare system to these changes.…”

“…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 .…”