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.
Objetivo: Descrever a utilização de recursos em saúde de pacientes com atrofia muscular espinhal (AME) no Sistema Público de Saúde Brasileiro (SUS) desde 2015, de acordo com a faixa etária. Métodos: Analisaram-se os dados hospitalares e ambulatoriais de pacientes com AME no DATASUS de janeiro de 2015 a setembro de 2020. Foram incluídos pacientes com código de CID-10 G12.0 (atrofia muscular espinhal infantil tipo I Werdning-Hoffman) ou G12.1 (outras atrofias medulares espinhais hereditárias) com pelo menos um registro utilizando o código de nusinersena ou o código de procedimento relacionado à doença desde 2010. Os procedimentos relacionados à doença foram definidos por meio de trabalho colaborativo entre autores, incluindo três autores médicos que atuam no SUS. Resultados: No total, 3.775 pacientes com AME preencheram os critérios de elegibilidade. Procedimentos de fisioterapia passaram de 11,34 (2,49 24,40) por paciente por ano (PPPY) no grupo 0 6 meses para 3,30 (0,84 11,76) PPPY no grupo > 36 meses. A mediada de procedimentos de órteses foi de 1,64 (0,66 3,41) PPPY no grupo 0 6 meses para 0,63 (0,34 1,33) PPPY no grupo > 36 meses. Exames foram realizados principalmente por pacientes mais jovens (0 6 meses e > 6 18 meses). A porcentagem de pacientes que realizaram procedimentos ventilatórios parece aumentar ao longo da idade, já a fonoterapia e o uso de nusinersena parecem reduzir. Conclusão: Este estudo demonstra uma importante utilização de recursos em saúde no SUS pelos pacientes com AME e destaca a necessidade de implementação de estratégias baseadas em evidência para gerenciar esses pacientes e o uso de recursos no sistema de saúde
Subject(s)
Unified Health System , Muscular Atrophy, Spinal , Rare DiseasesABSTRACT
BACKGROUND: The different phenotypic presentations of fibromyalgia (FM) have been infrequently studied and may have diagnostic and therapeutic implications. The aim of this study was to explore differences between FM patients with classical symmetric (s-FM) presentation and FM patients with marked asymmetric (a-FM) pain. METHODS: We performed two consecutive cross-sectional studies on FM patients and matched healthy volunteers (HV). FM patients were divided into a-FM (and s-FM groups according to their score of pain intensity on each body side; patients with a difference of ≥40 mm in VAS between left and right sides were classified as a-FM, otherwise classified as s-FM. Participants (FM = 32; HV = 31) were assessed for clinical, cortical excitability (CE), quantitative sensory testing (QST; study 1), and intraepidermal nerve fibre density (IENFD) determinations (study 2). RESULTS: While pain intensity did not significantly differ between s-FM and a-FM patients, pain interference in daily activities was significantly higher in the a-FM as compared to the s-FM group (54.7 ± 8.9 and 37.6 ± 13.5; p < .0001). PPT was significantly lower in the more painful side of a-FM as compared to the HV (27.7 ± 7.9 and 49.9 ± 13.0; p < .0001), while PPT in the less painful side of a-FM was significantly higher than PPT values in the s-FM (35.8 ± 8.3 and 27.7 ± 5.5; p = .031). S-FM and a-FM had significantly abnormal intracortical inhibition values on CE measurements compared to HV. There were no significant differences in IENFD between groups. CONCLUSIONS: Within the current FM criteria, there exist different phenotypes with clinical, psychophysics, and neurophysiological findings that are not related to peripheral IENFD abnormalities. SIGNIFICANCE: Current fibromyalgia criteria may contain different phenotypes of fibromyalgia based on the lateralization of pain.