Objective. To determine the adherence to oral maintenance medication among pediatric cancer patients and know their beliefs about medications. Population and methods. Information was obtained from parents, adolescents, and oncologists from six public children's hospitals of Argentina during 2018 and 2019. Questionnaires on adherence (Simplified Medication Adherence Questionnaire) and beliefs about medication (Beliefs About Medicines Questionnaire) were administered. Patients were considered adherent if they referred taking their medication without missing a dose and complying with fasting time. Results. N = 203 patients. Parent-reported adherence was 75 %; adherence estimated by oncologists, 82 %; and that referred by adolescents, 45 %. The outcome measures associated with adherence were financial solvency, diagnosis, treating hospital, number of children under the care of the caregiver, cancer treatments received, and presence of barriers in compliance. Sample subjects did not perceive medications as harmful, but considered they were overused. Most subjects perceived the necessity to take antineoplastic agents to maintain or recover their health, but also expressed their concerns. The perception about medication was similar between parents and adolescents, and was not associated with the level of adherence. Conclusions. In this sample, parent-reported adherence was 75 %. Parents and patients perceived a necessity for medication and expressed their concerns about treatment.
Background. Blood diseases and cancer are part of a group of rare conditions in pediatrics. In general, cancer treatments are prolonged (months or years), so psychosocial support has been introduced to provide comprehensive care to these patients. Objective: To explore psychosocial care provided at the public hospitals of Argentina to children and adolescents with cancer. Population and Methods. An electronic questionnaire was sent to the heads of the Departments of Hematology and Oncology, Mental Health, and Social Services of 27 public hospitals providing care to pediatric patients with cancer. The survey included questions related to psychosocial care provided to this group of patients. Answers were collected and processed in the 2013-2014 period. Results. Of the total number of health care providers contacted, 62.6% (47/75) completed the questionnaire. As per hematologistoncologists, the three specialties complied with the recommendations made by the International Society of Pediatric Oncology to a greater extent than that reported by the psychosocial area. Such difference was repeatedly observed in all answers. The standards that were observed more consistently were continuation of education and care of healthy siblings. The health care providers from the three specialties indicated that they lacked formal mechanisms to detect failures in treatment adherence in an early manner, although treatment withdrawal interventions were systematized. Providers from the psychosocial area indicated that human resources were lacking and perceived little interdisciplinary work. Conclusions. This study reported partial adherence to the standards recommended by the International Society of Pediatric Oncology. The assessment made by hematologists-oncologists was different from that made by health care providers from the psychosocial area.
RESUMENObjetivo. Determinar la adherencia de pacientes oncológicos pediátricos a la medicación oral del mantenimiento y conocer sus creencias sobre la medicación. Población y métodos. Durante 2018-19, se recogió información de padres, adolescentes y oncólogos en seis hospitales públicos pediátricos de la Argentina. Se administraron cuestionarios de adherencia (Simplified Medication Adherence Questionnaire) y de creencias sobre la medicación (Beliefs About Medicines Questionnaire). Se consideró adherente a quien refirió tomar la medicación sin saltear dosis y respetando el tiempo de ayuno. Resultados. N = 203 pacientes. La adherencia informada por los padres fue del 75 %; la estimada por los oncólogos, del 82 %, y la referida por adolescentes, del 45 %. Las variables que mostraron asociación con la adherencia fueron solvencia económica, diagnóstico, hospital tratante, cantidad de hijos a cargo, tratamientos oncológicos realizados y existencia de obstáculos en el cumplimiento. Esta muestra no percibía los medicamentos como dañinos, pero consideró que se los utilizaba abusivamente. La mayoría percibía la necesidad de tomar la medicación antineoplásica para mantener/recuperar la salud, pero también expresó preocupaciones. La percepción sobre la medicación fue similar entre los padres y los adolescentes, y no se asoció con el nivel de adherencia. Conclusiones. La adherencia informada por los padres en esta muestra fue del 75 %. Los padres y los pacientes percibían la medicación como necesaria y manifestaron preocupaciones vinculadas al tratamiento. Palabras clave: cumplimiento y adherencia al tratamiento, leucemia, mantenimiento, pediatría.
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