Abstract
Objective: To evaluate the Functional Independence, Quality of Life and outline the epidemiological profile of hemophiliac patients treated at the physiotherapy outpatient clinic of the Pará Hemotherapy and Hematology Center Foundation. Methods: This is an observational, cross-sectional, quantitative study approved by the Ethics Committee in Research with Human Beings at the University of the State of Pará; carried out with 22 hemophiliac individuals, of both sexes, over 18 years of age, assisted in the rehabilitation sector. Three instruments were applied for data collection, the WHOQOL-bref questionnaire on Quality of Life, the Functional Independence Score in Hemophilia for Functional Capacity and the Epidemiological Profile Form. The results obtained were analyzed with descriptive statistics using the BioEstat 5.0 software. Results: The sample, with a mean age of 37.63 ± 13.64 years, was composed mostly of male hemophiliacs (95.5%), who have Hemophilia A (72.7%). The Functional Capacity presented an average of 26.18 ± 6.82, the Quality of Life of 13.87 ± 2.36 and they were proportional. Conclusion: The study fulfilled its main objective, demonstrating for Functional Capacity the activities of squatting and running with greater commitment and regular Quality of Life, reaffirming a positive correlation between the variables.
References
AGUIAR-PALACIOS LH, et al. Self-efficacy for weight control ad quality of life in Mexican patients with hemophilia. Revista Cubana de Hematología, Inmunología y Hemoterapia, 2022; 38(3): 1688.
BEZERRA JRP, et al. Relação entre adesão ao tratamento e qualidade de vida na hemofilia: revisão integrativa da literatura. Research, Society and Development, 2022; 11(11): 448111130318.
BRASIL. Manual de diagnóstico e tratamento de inibidor em pacientes com hemofilia congênita. 2022. Disponível em: https ://bvsms.saude.gov.br/bvs/publicacoes/manual_diagnostico_inibidor_hemofilia_congenita.2ed.pdf. Acessado em: 26 de agosto de 2023.
BRASIL. Manual de Hemofilia. 2015. Disponível em: https ://pesquisa.bvsalud.org/bvsms/resource/pt/mis-37519. Acessado em: 26 de agosto de 2023.
BRASIL. Manual de Reabilitação na Hemofilia. 2011. Disponível em: https ://bvsms.saude.gov.br/bvs/publicacoes/manual_reabilitacao_hemofilia.pdf. Acessado em: 26 de agosto de 2023.
CHOUDARY R, et al. Functional Independence Score in Haemophilia: A Hospital Based Observational Study in a Tertiary Care Center in Central India. Journal Evidence Medicine and Healthcare, 2019; 6(41): 2702-2705.
DU Z, et al. Application of Quality of Life Scale in Hematological Disease Research. Journal of Clinical and Nursing Research, 2019; 3(5): 29-33.
FLECK MPA, et al. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida WHOQOL-bref. Revista de Saúde Pública, 2000; 34(2): 178-183.
IBRAHIEM OA, et al. Assessment of quality of life by functional Independence score in hemophilic patients: a single-center experience. The Egyotuan Journal of Internal Medicine, 2022; 34(74): 1-9.
KUPEYEV ER e AIMAGANBETOVA OK. Research of the quality of life and stress level of people with hemophilia in Kazakhstan. The Journal of Psychology & Sociology, 2020; 2(72) 73-80-84.
MARTÍNEZ-SÁNCHEZ LM, et al. Hemofilia: abordaje diagnóstico y terapeutico. Revisión bibliográfica. Revista Facultad Nacional de Salud Pública, 2018; 36(2): 85-93.
MORAES LBL, et al. Independência Funcional de adolescentes com hemofilia atendidos no hospital do HEMOPE, segundo a gravidade da doença. Hematology, Transfusion and Cell Therapy, 2021; 43(1): S1-S546.
O’HARA J, et al. The impact of severe haemophilia and the presence target joints on health-related quality of life. Health and Quality of Life Outcomes, 2018; 18(84): 1-8.
OLIVEIRA ABT, et al. Hemofilia: Fisiopatologia e Diagnóstico. Research, Society and Development, 2022; 11(12): 564111234935.
PAREDES C, et al. Perfil demográfico y epidemiológico de pacientes con Hemofilia y von Willebrand atendidos en el Área de Estomatología del Hospital de Especialidades Carlos Andrade Marín. Revista Médica Científica CAMbios, 2019; 18(1): 18-22.
PEDROSO B, et al. Cálculo dos escores e estatística descritiva do WHOQOL-bref através do Microsoft Excel. Revista Brasileira de Qualidade de Vida, 2010; 2(1): 31-36.
POONNOOSE PM, et al. Functional Independence Score in Haemophilia (FISH): A new perfomence based instrument to measure disability. Haemophilia, 2005; 11(6): 598-603.
SAYAGO M e LORENZO S. O acesso global e nacional ao tratamento da hemofilia: reflexões da bioética crítica sobre exclusão em saúde. Interface (Botucatu), 2020; 24: 180772.
SCHIAVONI M, et al. Health Related Quality of Life and Psychopathological Symptoms in People with Hemophilia, Bloodborne Co-Infections and Comorbidities: An Italian Multicenter Observational Study. Mediterraean Jounal of Hematology an Infeccious Diseases, 2023; 15(1): 2023005.
SHASTRI M, et al. Clinical Profile of Adult Hemophilia Patients with Special Reference to FISH and WFHPE Score: An Observational Cross-sectional Study. Journal Association of Physicians India, 2023; 71(8): 29-32.
SILVA JCL, et al. Qualidade de Vida dos hemofílicos: análise pós-implantação do hemonúcleo e distribuição de fatores da coagulação. Ciência & Desenvolvimento: Revista Científica da FAINOR, 2020; 13(1): 124-139.
SILVA REA, et al. Perfil clínico e sociodemográfico de pacientes com hemofilia atendidos na consulta de enfermagem no ambulatório de coagulopatias hereditárias do HEMOPE. Hematology, Transfusion and Cell Therapy, 2022; 44(2): S1-S689.
SINGH Y e VOHRA DK. Epidemiological Profile of Patients with Hemophilia at Tertiary Care Center of Western Uttar Pradesh. International Journal of Contemporany Medicine Surgery and Radiology, 2018; 3(4): D99-D103.
SOUZA CRS, et al. Perfil epidemiológico de pacientes com Hemofilia A e doenças associadas ao uso de fator VIII/recombinante. Revista de Ciências Médicas e Biológicas, 2021; 20(4): 568-574.
TELES WS, et al. Perfil epidemiológico dos hemofílicos em tratamento em um ambulatório do nordeste brasileiro. Hematology, Transfusion and Cell Therapy, 2021; 43(1): S1-S546.
TELES WS, et al. Terapêutica das coagulopatias em pacientes atendidos no hemocentro de uma região do nordeste brasileiro. Research, Society and Development, 2021; 10(9): 15510917814.
TIMMER MA, et al. Measuring activities and participation in persons with haemophilia: A systematic review of commonly used instruments. Hemophilia, 2018; 24: 33-49.
TRINDADE GC, et al. Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionaires. Hematology, Transfusion and Cell Therapy, 2019; 41(4): 335-341.
WILLEY, RE. et al. From the voices of people with haemophilia A and their caregivers: Challengs with current treatment, their impact on quality of life and desired improvements in future therapies. Haemophilia, 2019; 25(3): 433-440.
WU D e SHEN S. Osteoporosis and associated risck factors in patients with severe hemophilia A: a case-control study from China. BMC Musculoskeletal Disorders, 2023; 24(1):657.
