Avaliação da adesão ao tratamento profilático na hemofilia: estudo transversal no interior do Estado de São Paulo (Brasil)
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Data
2016-09-06
Autores
Guedes, Vanessa Girotto [UNESP]
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Universidade Estadual Paulista (Unesp)
Resumo
Introdução: A hemofilia é um distúrbio hereditário da coagulação que se caracteriza pela ocorrência de hemorragias espontâneas ou traumáticas. Atualmente há um amplo consenso de que o tratamento ideal para a hemofilia é a profilaxia através da infusão endovenosa regular dos Fatores Anti-Hemofílicos (FAH) deficientes. O tratamento profilático é intensivo e exige dedicação ao longo da vida, sendo a adesão a este regime um fator crucial para prevenir sangramentos e manter a saúde. Há uma grande lacuna de conhecimento quanto à adesão à profilaxia na hemofilia bem como às barreiras para a adesão principalmente em países de renda baixa e média. O presente estudo teve o intuito de caracterizar a adesão ao tratamento profilático e identificar barreiras para tal comportamento em um conjunto de pacientes hemofílicos em dois hemocentros do interior de São Paulo. Metodologia: Trata-se de um estudo transversal conduzido entre agosto de 2015 e janeiro de 2016. Avaliamos, através de medidas objetivas, o número de unidades de FAH utilizados em um determinado período de tempo e, através de uma entrevista semiestruturada, investigamos a percepção da adesão autorreferida. Adicionalmente questionamos os entrevistados sobre sua percepção quanto a adesão dos outros hemofílicos em geral ao tratamento profilático. Resultados: De um total de 31 pacientes elegíveis, 29 aceitaram participar na pesquisa. A idade média dos pacientes foi de 21,4 anos (DP: 14,1 anos). Foi possível calcular a proporção de doses de FAH não aplicadas em relação à dose total prescrita por período de tempo analisado para 26 pacientes. Apesar de 27 dos 29 pacientes caracterizarem sua prática de adesão à profilaxia como boa ou muito boa, apenas 12 dentre 26 pacientes foram classificados como aderentes ou aderentes subotimos. As proporções médias de doses não aplicadas de acordo com o autorrelato, quanto à percepção relativa aos outros hemofílicos e aferida de forma objetiva foi de 0%, 20% e 28,3% respectivamente. A barreira para a adesão relatada com maior frequência foi a falta de compreensão da lógica da profilaxia. Conclusão: Os resultados da pesquisa apontam para a necessidade do desenvolvimento de intervenções que auxiliem os indivíduos com hemofilia a aderirem ao tratamento, identificando ou antecipando possíveis dificuldades.
Introduction: Hemophilia is an inherited coagulation disorder that is characterized by the occurrence of spontaneous and traumatic bleeding episodes. Currently there is a wide consensus that prophylaxis with regular intravenous infusion of the deficient Anti-Hemophilic Factors (AHF) is the ideal treatment for this condition. The prophylactic treatment is very demanding and requires dedication of patients / families throughout their lifetime. Adherence is essential for the prevention of bleeding episodes and the maintenance of health of hemophilic patients. There is a major gap of knowledge concerning the adherence of hemophilic patients to prophylaxis as well as about the barriers to adherence in low- and middle-income countries. The present research aimed to characterize the adherence to prophylaxis and to identify barriers to that approach in hemophilic patients from two centers in the Northwest region of the state of São Paulo, Brazil. Methods: This was a cross-sectional study conducted between August 2015 and January 2016. We have objectively assessed the number of AHF units used by patients within a given period of time. We also examined through a semi-structured interview the perception of patients / caregivers concerning their adherence to treatment and their perception regarding how other hemophilic patients in general adhere to the prophylactic treatment. Results: Twenty-nine patients out of 31 agreed to participate in the research. The mean age of patients was 21.4 years (SD: 14.1). We were able to calculate the proportion of missed doses of AHF in comparison with the total amount prescribed for 26 patients. Although 27 out of 29 patients perceived their adherence to prophylaxis as good or very good, only 12 out of 26 patients were classified as adherent of suboptimally adherent. The median proportions of missed doses of AHF according to selfreport, to the perception about other hemophilic patients, and to the objective assessment of adherence were 0%, 20% and 28,3%, respectively. The most frequently reported barrier to adherence identified was the lack of understanding about the principles of prophylactic treatment in hemophilia. Conclusion: The present results signal the need for the development of interventions to help hemophilic patients to better adhere to prophylactic treatment through the identification and anticipation of possible barriers.
Introduction: Hemophilia is an inherited coagulation disorder that is characterized by the occurrence of spontaneous and traumatic bleeding episodes. Currently there is a wide consensus that prophylaxis with regular intravenous infusion of the deficient Anti-Hemophilic Factors (AHF) is the ideal treatment for this condition. The prophylactic treatment is very demanding and requires dedication of patients / families throughout their lifetime. Adherence is essential for the prevention of bleeding episodes and the maintenance of health of hemophilic patients. There is a major gap of knowledge concerning the adherence of hemophilic patients to prophylaxis as well as about the barriers to adherence in low- and middle-income countries. The present research aimed to characterize the adherence to prophylaxis and to identify barriers to that approach in hemophilic patients from two centers in the Northwest region of the state of São Paulo, Brazil. Methods: This was a cross-sectional study conducted between August 2015 and January 2016. We have objectively assessed the number of AHF units used by patients within a given period of time. We also examined through a semi-structured interview the perception of patients / caregivers concerning their adherence to treatment and their perception regarding how other hemophilic patients in general adhere to the prophylactic treatment. Results: Twenty-nine patients out of 31 agreed to participate in the research. The mean age of patients was 21.4 years (SD: 14.1). We were able to calculate the proportion of missed doses of AHF in comparison with the total amount prescribed for 26 patients. Although 27 out of 29 patients perceived their adherence to prophylaxis as good or very good, only 12 out of 26 patients were classified as adherent of suboptimally adherent. The median proportions of missed doses of AHF according to selfreport, to the perception about other hemophilic patients, and to the objective assessment of adherence were 0%, 20% and 28,3%, respectively. The most frequently reported barrier to adherence identified was the lack of understanding about the principles of prophylactic treatment in hemophilia. Conclusion: The present results signal the need for the development of interventions to help hemophilic patients to better adhere to prophylactic treatment through the identification and anticipation of possible barriers.
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Palavras-chave
Adesão, Hemofilia, Brasil, Tratamento profilático, Profilaxia, Adherence, Fisioterapia, Brazil, Prophylaxis, Hemophilia, Treatment, Centro de tratamento em hemofilia, Treatment of haemophilia center