Objective: There are several factors that contribute to poor adherence to treatment in children and adolescents with chronic rheumatic diseases, worsening their quality of life and prognosis. Our aim was to assess the rates of adherence to treatment and to identify the socioeconomic and clinical factors associated. Methods:The sample included 99 patients with juvenile idiopathic arthritis, systemic erythematosus lupus, dermatomyositis or juvenile scleroderma. All patients were followed at the outpatient pediatric rheumatology for a minimum period of 6 months. To assess adherence, a questionnaire was administered to the providers, which included three blocks: 1) demographic, clinical and laboratory data; 2) medication adherence; and 3) attending follow-up appointments, examinations and use of orthoses. A value lower than or equal to 80% of the prescribed was considered poor adherence.Results: A total of 53% of patients showed good overall adherence, observed when the caregiver lived in a stable union marital status (p = 0.006); 20 patients (20.2%) presented poor medication adherence, related to the use of three or more medications daily (p = 0.047). The causes of poor adherence were forgetfulness, refusal, incorrect dose or lack of medication, personal problems, and financial difficulties. Conclusions:We observed good overall treatment adherence in patients whose providers lived in stable union and poor adherence to medication in patients who used more than three types of medication daily. There was no association between the adherence rates and sex, age, time since diagnosis and disease activity. J Pediatr (Rio J). 2012;88(6):483-8:Patient adherence, therapy, chronic disease, pediatrics, rheumatology. ResumoObjetivo: São vários os fatores que contribuem para a má adesão ao tratamento de crianças e adolescentes com doenças reumáticas crônicas, gerando piora da qualidade de vida e do prognóstico. Nosso objetivo foi avaliar as taxas de adesão ao tratamento e identificar os fatores socioeconômicos e clínicos associados. Métodos:Foram incluídos 99 pacientes com artrite idiopática juvenil, lúpus eritematoso sistêmico, dermatomiosite ou esclerodermia juvenil. Todos os pacientes eram acompanhados no ambulatório de reumatologia pediátrica por um período mínimo de 6 meses. Para avaliação da adesão, foi aplicado aos cuidadores um questionário composto por três blocos: 1) dados demográficos, clínicos e laboratoriais; 2) adesão ao tratamento medicamentoso; e 3) comparecimento às consultas, realização de exames e utilização de órteses. Foi considerada má adesão, quando realizado valor menor ou igual a 80% do prescrito.Resultados: Um total de 53% dos pacientes apresentou boa adesão ao tratamento global, observada quando o cuidador possuía união estável (p = 0,006); 20 pacientes (20,2%) apresentaram má adesão ao tratamento medicamentoso, relacionada à utilização de mais que três medicamentos diários (p = 0,047). As causas de má adesão ao tratamento foram esquecimento, recusa, dose incorreta ou falta de medicamento, prob...
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.
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.
A 21-year-old man presented with a 4-year history of seizures, visual hallucinations, cognitive decline, and gait impairment. Neurologic examination revealed myoclonic jerks, ataxia, and retinitis pigmentosa. Axillary skin biopsy showed Lafora bodies (figure). Lafora disease, the most common progressive myoclonic epilepsy with adolescent onset, is characterized by cognitive decline, visual hallucinations, myoclonus, generalized seizures, and pathognomonic inclusion bodies of polyglucosan found in cells of the skeletal muscle, skin, and brain.
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