Analysis of epidemiological and economic data of hemophilia A patients in Brazil / Análise de dados epidemiológicos e econômicos de pacientes com hemofilia A no Brasil

Objective: To describe the annual medical direct costs per hemophilia A (HA) patient in the Brazilian public healthcare system (SUS) and to understand and describe the patients' hospital journey, demographical characteristics, and the procedures in the. Methods: This retrospective analysis of DataSUS databases. Data from individuals with registries of HA treatment were gathered between January 1st, 2018, and June 30th, 2021. Besides the D66 ICD-10th code (HA), were also considered the occurrence of some procedures like factor VIII dosage and by-pass therapy dispensation or administration as inclusion criteria. Exclusion criteria were occurrence of factor IX dispensation and female patients were excluded, among others. A record linkage using sociodemographic characteristics was conducted to identify unique patients. Results: Were identified 2,298 individuals underwent ambulatory and 1,018 underwent hospital treatments. The results show that most patients are from the Southeast region of the country, white and middle-aged individuals. The median cost of HA treatment per patient-year was BRL 90.36 for ambulatory care and BRL 1,015.31 for hospital care procedures. The costs were significantly higher for more severe patients and for those between 12 and 18 years old (BRL 1,974.75 and BRL 1,049.09, respectively). Conclusion: The evidence demonstrated encourages the implementation of policies aiming to improve the quality of care provided to patients with HA. Providing referral centers for hemophiliac patients is primordial for the success of the treatment and can result in efficiency.

Objetivo: Descrever os custos médicos diretos anuais por paciente com hemofilia A (HA) no sistema público de saúde brasileiro (SUS) e compreender e descrever a jornada do paciente em âmbito hospitalar, as características demográficas e os procedimentos realizados no SUS. Métodos: Análise retrospectiva das bases de dados do DataSUS. Foram coletados dados de indivíduos com registro de tratamento de HA entre 1º de janeiro de 2018 e 30 de junho de 2021. Além do código D66 CID-10 (HA), foi considerada a ocorrência de procedimentos como dosagem do fator VIII e dispensação ou administração de terapia de by-pass como critérios de inclusão. Dentre os critérios de exclusão, destacam-se a dispensação do fator IX e indivíduos do sexo feminino. Um pareamento de registros usando características sociodemográficas foi realizado para identificar pacientes únicos. Resultados: Foram identificados 2.298 indivíduos em tratamento ambulatorial e 1.018 em tratamento hospitalar. Os resultados mostraram que a maioria dos pacientes são da região Sudeste do país, brancos e de meia-idade. O custo médio do tratamento da HA por paciente-ano foi de R$ 90,36 para atendimento ambulatorial e de R$ 1.015,31 para atendimento hospitalar. Os custos foram significativamente maiores para pacientes mais graves e entre 12 e 18 anos (R$ 1.974,75 e R$ 1.049,09, respectivamente). Conclusão: As evidências demonstradas incentivam a implementação de políticas que visem melhorar a qualidade da assistência prestada aos pacientes com HA. A disponibilização de centros de referência para pacientes hemofílicos é primordial para o sucesso do tratamento e pode resultar em maior eficiência.

Extended half-life recombinant factor VIII treatment of hemophilia A in Brazil: an expert consensus statement.

INTRODUCTION: Treatment of hemophilia A in Brazil is offered to all patients at no cost. However, several unmet medical needs exist. METHOD: In this study, we applied the Delphi method to discuss with seven hemophilia A specialists the challenges that patients and the health system face regarding hemophilia A treatment and opportunities for improvement. RESULTS: A consensus was obtained regarding the number of weekly infusions and patient adherence to treatment. The bleeding profile, unfavourable pharmacokinetics (PKs), low adherence and high daily activity were patient profiles that would benefit from using the extended half-life (EHL) recombinant factor VIII (rFVIII). The advantages of treatment with the EHL rFVIII were the lower number of infusions per week, which could increase patient adherence and decrease the risk of bleeds, due to a more constant plasma level, a lower value. Additionally, the EHL rFVIII could improve quality of life, especially in patients with high daily activity, such as adolescents and young adults. The panelists mentioned that EHL rFVIII, if available, could be offered first to the priority group (adolescents between 12 and 19 years old), followed by adults (20 to 64 years old) and elderly people (over 65 years old). CONCLUSION: In summary, the EHL rFVIII offers the optimal prophylaxis by decreasing the dose frequency, increasing the treatment adherence and improving the QoL, without compromising safety and efficacy.

Fatores do absenteísmo em primeira consulta num ambulatório de oncologia em um Hospital Universitário / xxx

RESUMO Introdução: o absenteísmo dos usuários de sistemas de saúde representa um grande problema para as organizações. O objetivo deste estudo foi identificar as razões para o absenteísmo dos pacientes em consulta médicas. Metodologia: pesquisa de campo nos ambulatórios de oncologia do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto. Os pacientes que não compareceram à primeira consulta em 2013 (356) foram contatados por meio telefônico, dos quais 299 não foi possível o contato por apresentarem telefone inválido, desligado, fora da área de cobertura ou por não atenderem a ligação. Resultados: 57 pacientes foram entrevistados e apontaram os motivos para falta. As respostas foram categorizadas. Os resultados mostraram que 27 pacientes (47%) não compareceram à consulta por motivos relacionados ao indivíduo ou comportamento, sendo "consultei-me em outro lugar" o mais recorrente (12,30%), seguido de "consulta coincidiu com outro compromisso" (7,02%) e "não me lembro o motivo" (7,02%). Individualmente, o motivo mais citado pelos pacientes foi "eu não faltei a consulta" (31,6%), o que sugere problemas de comunicação. Conclusão: as principais razões para o absenteísmo estão relacionadas ao indivíduo e que problemas de cadastro do paciente e comunicação dificultam a compreensão das causas do absenteísmo. (AU)

ABSTRACT Introduction: absenteeism of health system users is a major problem for organizations. The study aimed to identify the factors of absenteeism in outpatients at the General Hospital of the Medical School of Ribeirão Preto oncology clinics. Methodology: patients who did not attend the first appointment in 2013 (356) were contacted by telephone, of which 299 were not able to contact because they presented an invalid telephone number, disconnected, outside the coverage area or because they did not answer the call. Results: 57 patients were interviewed and indicated reasons for no show. The answers were categorized. The results showed that 27 patients (47%) did not attend the appointment for reasons related to the individual or behavior, the cause "I had an appointment elsewhere" was the most recurrent (12.30%), followed by "the appointment happened at the same time of another commitment" (7.02%) and "I cannot remember the reason" (7.02%). Individually, the most cited reason by the patients was "I did not miss the appointment" 18 (31.6%), thus suggesting communication problems. Conclusion:the main reasons for absenteeism are related to the individual and problems of patient registration and communication make it difficult to understand the causes of absenteeism. (AU)