TREATMENT ADHERENCE AMONG CHILDREN AND ADOLESCENTS IN A CYSTIC FIBROSIS REFERENCE CENTER.

OBJECTIVE: To evaluate the level of self-referenced treatment adherence (TA) and its association with clinical and sociodemographic variables in patients with cystic fibrosis assisted at a reference center, as well as compare the level of self-referenced TA with that presumed by the multidisciplinary team. METHODS: This is a cross-sectional study that included children and adolescents aged between 0-20 years with cystic fibrosis. Adolescents older than 14 years or their guardians, when younger than 14 years old, were interviewed using a standardized questionnaire. Professionals from the multidisciplinary clinic filled out another form with their impressions of the patients' TA. Clinical and laboratory data were obtained in the medical records. The TA was considered satisfactory if the total adherence index (TAI) was equal or higher than 80%. RESULTS: 53 patients were included with a median age of 112 months. The mean TAI was 83.2%. The mean TAIs for dornase alfa, pancreatic enzymes, continued use of inhaled tobramycin, vitamins supplements, nutritional supplements and dietary orientation was respectively: 86.1; 96.6; 78.6; 88.1; 51.8 and 78%. Children younger than 14 years presented better TA (p=0.021). The correlation between the self-referenced TA and the one presumed by the multidisciplinary team ranged from 0,117 to 0.402, being higher for Psychology and Nutrition professionals. CONCLUSIONS: The TAI was high particularly among children younger than 14 years. There was a positive correlation between the self-referenced TA and the one presumed by the Psychology (p=0.032) and the nutrition (p=0.012) professionals.

Treatment adherence among children and adolescents in a cystic fibrosis reference center / Adesão ao tratamento da fibrose cística entre crianças e adolescentes de um centro de referência

ABSTRACT Objective: To evaluate the level of self-referenced treatment adherence (TA) and its association with clinical and sociodemographic variables in patients with cystic fibrosis assisted at a reference center, as well as compare the level of self-referenced TA with that presumed by the multidisciplinary team. Methods: This is a cross-sectional study that included children and adolescents aged between 0-20 years with cystic fibrosis. Adolescents older than 14 years or their guardians, when younger than 14 years old, were interviewed using a standardized questionnaire. Professionals from the multidisciplinary clinic filled out another form with their impressions of the patients' TA. Clinical and laboratory data were obtained in the medical records. The TA was considered satisfactory if the total adherence index (TAI) was equal or higher than 80%. Results: 53 patients were included with a median age of 112 months. The mean TAI was 83.2%. The mean TAIs for dornase alfa, pancreatic enzymes, continued use of inhaled tobramycin, vitamins supplements, nutritional supplements and dietary orientation was respectively: 86.1; 96.6; 78.6; 88.1; 51.8 and 78%. Children younger than 14 years presented better TA (p=0.021). The correlation between the self-referenced TA and the one presumed by the multidisciplinary team ranged from 0,117 to 0.402, being higher for Psychology and Nutrition professionals. Conclusions: The TAI was high particularly among children younger than 14 years. There was a positive correlation between the self-referenced TA and the one presumed by the Psychology (p=0.032) and the nutrition (p=0.012) professionals.

RESUMO Objetivo: Avaliar o grau de adesão ao tratamento (AT) autorreferida e pesquisar sua associação com variáveis clínicas e sociodemográficas em pacientes com fibrose cística (FC) de um centro de referência e comparar o grau de AT autorreferida com o presumido pela equipe multidisciplinar. Métodos: Estudo transversal, incluindo crianças e adolescentes com FC entre zero e 20 anos. Foram realizadas entrevistas com os adolescentes maiores de 14 anos ou com os responsáveis dos mais jovens, utilizando-se formulário padronizado. Profissionais do centro preencheram outro formulário com suas impressões da AT dos pacientes. Registraram-se dados clínicos por meio da revisão de prontuários. A AT foi considerada satisfatória se o índice de adesão global (IAG) fosse igual ou superior a 80%. Resultados: Foram incluídos 53 pacientes, com mediana de idade de 112 meses. O IAG médio foi de 83,2%. Os índices de adesão à terapêutica (IAT) médios para alfadornase, enzimas pancreáticas, tobramicina inalatória de uso contínuo, suplementos vitamínicos, suplementos nutricionais e orientações dietéticas foram, respectivamente, 86,1; 96,6; 78,6; 88,1; 51,8 e 78%. Crianças com idade inferior a 14 anos apresentaram melhor AT (p=0,021). As correlações entre a AT autorreferida e a presumida pelos profissionais variaram de 0,117 a 0,402, sendo maiores para a psicologia e a nutrição. Conclusões: A taxa global de AT foi elevada, principalmente para menores de 14 anos. Houve correlação positiva entre a AT autorreferida e as avaliações da psicologia (p=0,032) e da nutrição (p=0,012).