RESUMO
ABSTRACT Objective: To develop a questionnaire that allows the early detection of patients at risk for poor adherence to medical and non-medical treatment in children and adolescents with chronic rheumatic diseases. Methods: The Pediatric Rheumatology Adherence Questionnaire (PRAQ) was applied in recently diagnosed patients within a period of one to four months after confirmation of the rheumatic disease. After six months, the patients' adherence to the medical and non-medical treatment was assessed. An internal consistency analysis was conducted to eliminate redundant questions in the PRAQ. Results: A total of 33 patients were included in the pilot study. Six months after the PRAQ had been applied, poor global adherence was observed in seven (21.2%) patients and poor adherence to medical treatment in eight (24.2%) patients. No correlation was observed between the PRAQ scores and the percentages of adherence, as well as the stratification for each index, except for a tendency to a correlation between socioeconomic index and poor adherence to medical treatment (p=0.08). A new PRAQ questionnaire with 25 of the 46 original questions was generated as a result of the reliability analysis. Conclusions: The usefulness of this questionnaire in clinical practice should be still evaluated. Due to the importance of a tool for the early detection of rheumatic patients at risk of poor adherence to treatment, the new PRAQ questionnaire should be reviewed and applied in a larger study to better define its validity and reliability.
RESUMO Objetivo: Desenvolver um questionário que permitisse a detecção precoce de pacientes em risco de má adesão ao tratamento medicamentoso e não medicamentoso para crianças e adolescentes com doenças reumáticas crônicas. Métodos: O Questionário de Adesão em Reumatologia Pediátrica (QARP) foi aplicado em pacientes recentemente diagnosticados, de um a quatro meses após a confirmação da doença reumática. Seis meses depois, foi avaliada a adesão do paciente ao tratamento medicamentoso e não medicamentoso. Foi realizada uma análise de consistência interna para eliminar questões redundantes no QARP. Resultados: Ao todo, 33 pacientes foram incluídos no estudo-piloto. Seis meses após a aplicação do QARP, observou-se baixa adesão global em sete pacientes (21,2%) e baixa adesão ao tratamento medicamentoso em oito (24,2%) pacientes. Não foi encontrada correlação entre os escores QARP e as porcentagens de adesão, bem como a estratificação para cada indicador, com exceção de uma tendência a uma correlação entre o indicador socioeconômico e a baixa adesão ao tratamento medicamentoso (p=0,08). Um novo questionário QARP com 25 das 46 perguntas originais foi gerado como resultado da análise de confiabilidade. Conclusões: A utilidade deste questionário na prática clínica ainda deve ser avaliada. Devido à importância de uma ferramenta para a detecção precoce de pacientes reumáticos em risco de má adesão ao tratamento, o novo questionário QARP deve ser revisado e aplicado em um estudo maior para que sua validade e confiabilidade sejam mais bem definidas.
Assuntos
Humanos , Masculino , Feminino , Criança , Adolescente , Inquéritos e Questionários , Cooperação do Paciente , Medição de Risco/métodos , Pediatria/métodos , Pediatria/normas , Fatores Socioeconômicos , Administração dos Cuidados ao Paciente/métodos , Administração dos Cuidados ao Paciente/organização & administração , Brasil/epidemiologia , Projetos Piloto , Doenças Reumáticas/terapia , Doenças Reumáticas/epidemiologia , Reprodutibilidade dos Testes , Fatores de RiscoRESUMO
OBJECTIVE: To describe demographic features, disease manifestations and therapy in patients with giant cell arteritis from referral centers in Brazil. METHODS: A retrospective cohort study was performed on 45 giant cell arteritis patients from three university hospitals in Brazil. Diagnoses were based on the American College of Rheumatology classification criteria for giant cell arteritis or temporal artery biopsy findings. RESULTS: Most patients were Caucasian, and females were slightly more predominant. The frequencies of disease manifestations were as follows: temporal headache in 82.2%, neuro-ophthalmologic manifestations in 68.9%, jaw claudication in 48.9%, systemic symptoms in 44.4%, polymyalgia rheumatica in 35.6% and extra-cranial vessel involvement in 17.8% of cases. Aortic aneurysms were observed in 6.6% of patients. A comparison between patients with biopsy-proven giant cell arteritis and those without temporal artery biopsies did not yield significant differences in disease manifestations. All patients were treated with oral prednisone, and intravenous methylprednisolone was administered to nearly half of the patients. Methotrexate was the most commonly used immunosuppressive agent, and low-dose aspirin was prescribed to the majority of patients. Relapses occurred in 28.9% of patients, and aspirin had a protective effect against relapses. Females had higher prevalences of polymyalgia rheumatica, systemic manifestations and jaw claudication, while permanent visual loss was more prevalent in men. CONCLUSIONS: Most of the clinical features of Brazilian giant cell arteritis patients were similar to those found in other studies, except for the high prevalence of neuro-ophthalmic manifestations and permanent blindness in the Brazilian patients. Aspirin had a protective effect on relapses.